Suffering from Restless Leg Syndrome

[Soozierules]

Does anyone out there have Afib AND Restless Leg Syndrome? It's awful.

I have tried so many medical, lifestyle & homeopathic remedies and I still have RLS!

Has anyone had luck with any special doctors that you can recommend?

Thanks!

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Afib?

[involuntarydancer]

Hi Soozie,

If I lived in the Maryland I would put myself on the long waiting list to attend the Johns Hopkins rls team as they seem really knowledgeable. If I lived in SoCal I would beg Dr. Buchfuhrer to take me. If I lived elsewhere in the US I would consult the rls.org website to see if one of their quality care providers was nearby.

I have yet to hear of a really highly recommended consultant in the UK although I am sure there are some.

As I am in Dublin (Ireland - not Ohio), I am blessed that my local GP and friend since university days is prepared to accept the information I have garnered from the US experts and the good people on this and other rls forums and will prescribe for me whatever I suggest based on informed knowledge or the latest fad I have latched on to (I am never sure if he is relieved or dismayed that I haven't managed to do myself in with the various prescription meds I have persuaded him to write me up). I do bring along my copy of Clinical Management of RLS to each appointment but he chooses never to look at it.

Where are you based? There may be people nearby who have recommendations. For many, however, the most effective treatments have been achieved by becoming very well informed personally and then finding a healthcare provider who is prepared to work along with you and accept that you know as much as they do - just in respect of this one isolated condition and its treatment.

[Bajatom]

Not A Fib, but from lack of sleep due to RLS I ended up in Emergency Room with PSVT, another heart tacycardia problem. drjohnm.org is a good resource for A Fib.

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Hi Soozierules. I have both a-fib (since 2011) and restless legs since May 2017. I'm in the process now of dealing with what meds might work for the rls. I have stabilized my a-fib. One goal I had for my a-fib was to stay off as many cardiac drugs as poss so as not to exacerbate the rls. So far I have had a successful'pace and ablate' in 2016 and take no rate/rhythm cardiac drugs. I chose to have the surgeries precisely to limit cardiac drugs. The only med left is coumadin. I have been on it several years and self-test my INR's weekly . I believe the coumadin affects my rls-among other health issues. It is a harsh drug and I asked my EP about having the procedure where they close the left atrial appendage opening using something called (here in US) a Watchman device. I had a successful Watchman implant Jan 15 (3 weeks ago) and will soon be able to be off all anticoagulants. I am very happy about this. It was an easy procedure done under general anesthesia using cardiac catheterization technique with an overnight stay for monitoring. Am anxious to see if I notice less rls sx after all the coumadin gets out of my system. Balancing these two conditions has become easier since I've been able to stop the (for me-horrible) cardiac drugs. I'm a retired nurse and believe the less meds the better. I'm 73 bty, There is not much info available re a possible connection between coumadin and rls but there is some. Most docs say no but having researched as much info as I could find I believe there is a correlation that will be shown down the road. There i also more info coming out re the connection between coumadin and dementia-still denied by many-which I also believe to be true. It tells me there is a possible neurological connection. A-fib and rls seem, in my opinion to be two conditions where treatment can'fight against each other' if not managed carefully. For me , one answer may lie in keeping the cardiac drugs to a minimum. I would be interested in how you are finding ways to manage the two together. Take care. irina1975