Help

[Woody4]

All my Dr will give me is roprinole. It doesn't seem to work anymore if anything my arms are getting worse. What can I buy at the natural stores that might help??

[Highlighters]

I have tried every thing from health shops nothing works, Ropinirol while not the greatest seem to work the best for me, have to take by 5pm and then again before bed. If u can get hold of some cannabis u might like to try it, defently works for me and a lot of other's also works well for the agitation of not being able to sleep, good luck

[Pippins2]

What dose of Ropinerole are you taking? Have you had to increase the dose? You may be suffering from augmentation which means in very simple terms that the medication is making your RLS worse

[Highlighters in reply to Pippins2]

3 mg max, 1.5 at 5 another 1.5 at 8 seems to work best for me

[Hidden]

I'll echo Pippins2 about the augmentation and advise that you ask your Dr to look at clinical guidelilnes for the treatment of RLS, NICE guidelines if you live in Britain or the north of Ireland:

cks.nice.org.uk/restless-le...

If the GP is refusing you any other drug you'll need to consider 2 things imho:

1 - have you a history of addiction or a family history? Some of the drugs have a potential for addiction and the Dr may be trying to keep you diverted from the medications that can be misused.

2 - A change of Dr. If the Dr is stuck on one drug treatment, on that is almost certainly exacerbating things and not using any of the others - Lyrica, Codeine, Tramadol, etc then your Dr is not up to the task and you should be attempting to access another one if at all possible.

I got some great advice on augmentation here:

healthunlocked.com/rlsuk/po....

as you'll read I was thinking of going to look for more drugs until I was reassured I was suffering augmentation and managed to get things sorted.

Best of luck.

[Woody4 in reply to Hidden]

As a Veteran I have to see the Dr they give me. She basically just treats the everyday illnesses, blood pressure, cholesterol, etc. Doesn’t want to hear about any other problems. It took over 10 years before I was seen by a cardiologist and found out my heart walls had thicken. I can’t afford going to another Dr. That’s why I’m looking for alternative meds.

[Hidden in reply to Woody4]

That is one BIG reason I am against fighting for ANY country - when you are done with, you are done with!

Any way no politicking, that's a bloody shame as she is, imho, hampering your treatment.

Maybe take a look into Cannabis or Kratom, both have been/are used by many on here, myself included with some great effects.

Hope you get relief soon.

[involuntarydancer]

Raising iron levels works well for many sufferers. It is advisable to get serum ferritin tested (this should be the first step any doctor takes when treating rls) to make sure they are not already high. Make sure to get the actual figure not just that you are ‘normal’ and if it is below 100 start an iron supplement - most people on here take iron bisglycinate as it is not necessary to take Vit C with it. Take on an empty stomach and don’t eat for an hour. some suggest taking it every other day as daily can impede absorption.

Many also find magnesium helpful. Either as a rub directly on the legs, in a bath or as a supplement.

You could spend a fortune on the other otc suggestions that crop up here. Eg taurine, coq10, vit D, vit B12, etc. I have tried them all and nothing other than iron and a magnesium rub made an impact on the legs. Better advice is avoid triggers (ice cream can be bad and sugar generally) and don’t take anti-histamines, Benedryl, some antacids, amitrypriline - see the website for a more detailed and precise list of exacerbants.

[Beechie2014]

Hiya. What dose roprinerole do you take? I take it upto 8mg when im bad with rls. I also know an illegal herb that is also excellent x

[LotteM in reply to Beechie2014]

Hi Beechie, do you take the 8 mg on a daily basis? That is a HUGE amount, the official max dose for Parkinson’s, whereas it is officially 5 mg for RLS and RLS scientists specialist have been recommending a max of only 1 mg. I hope it continues to work for you, because when not, you may be in for a difficult time. Be alerted when your symptoms start earlier and/or spread to other body parts. When such things happen, do not increase further, but rather reduce, very slowly. And to be prepared read all about augmentation (use search function on HU or check out rls-uk.org/augmentation-reb....

[Woody4]

Never expected this kind of response. I am extremely grateful. I'm hoping that even though most of my rls is actually ars (arm restless syndrome) that what I am learning will still apply.

[Woody4]

I take 2mg of roprinole and 2 50mg of tramadol 2 hours before bed.

[involuntarydancer in reply to Woody4]

If it’s in your arms there is a good chance the ropinerole is causing the problems. Was it always in your arms or did it start out in the legs? How long have you been taking ropinerole? Have you had to increase the dose?

[Woody4]

About 10 years ago is when it started. Both were happening, arms and legs, but mostly arms. Dr then put me on the roprinole. I wasn't good taking it every night in the beginning. When I would feel the 'moving' coming on I would take a pill and wait awhile for it to start working. The symptoms went away for awhile but came back bad about 2 years ago. Legs would usually start then stop when it would go to my arms. That's when I started diligently taking it every night. First it was 1 50mg every night with the tramadol (which I have been taking for over 10 years for back problems). Then in the last 6 months with the increase of symptoms and the roprinole not really working she put me on 2 pills a night. Yesterday I was informed they are sending me to a neurologist. Any input on that??

[involuntarydancer in reply to Woody4]

Even a relatively quick glance through the posts on this forum will reveal that it is rare to find a GP or even a neurologist who is particularly knowledgeable about rls and the various treatment options. A really good indicator is if they suggest getting your iron levels checked. That would be one of the first things a knowledgeable medical practitioner would suggest. Even then they may just suggest increasing the ropinerole which, in your shoes, I would be VERY reluctant to do. You end up on a merry-go-round of ever worsening symptoms requiring a persistent increase in drug dose. And then ultimately a tortuous withdrawal from the ropinerole. In general this condition seems to respond better to a cocktail of drugs at a low dose. It may be better for you to add in an anti-convulsants such as gabapentin than to increase ropinerole. In fact, in your shoes, I would probably start to reduce the ropinerole gradually and ultimately discontinue it to see if my symptoms improved without it.

It is relatively unusual for rls to present in arms as well as legs but by no means unknown. It’s just that by far the most common reason for restless arms is due to augmentation caused by a dopamine agonist drug such as ropinerole. It’s hard to tell in your case as you had the restless arms before you started the drug.

Sorry not to be more help.

[Brica in reply to Woody4]

Yes, rls can affect any part of the body, but mostly legs and arms. I suffered for years, the usual meds would work for a few months, then stop. This year I began researching on the web particularly Dr. Early at Johns Hopkin in MD. This is where I learned about iron supplementation, ferritin level, etc. My GP always told me my values were normal, but Dr. Early’s research suggests that some people with RLS need much higher levels. I began taking SLO-release iron pills 4x day in May: now taking 2x day; found Dr. Risk, a neurologist listed on the RLS Foundation website and what a relief to discuss with a physician who knew about RLS and how to treat it. Blood work needs to be checked frequently; my iron level is 157 and my ferritin level is 127. I am presently 90% symptom free and sleeping. I take Klonopin at night ( 1mgm. to 1.5mgm). It is important to find a Dr. who treats RLS. Wishing you relief soon. Brica

[Woody4]

After reading the much appreciated comments, I started taking only 1 pill (1mg) instead of 2. And much to my relief things have dramatically improved. Except for 1 nite my symptoms are gone.

[Woody4]

Read on one of the posts about using magnesium. What dose??