After over 25 years struggling with RLS ( I am now 71) previously taking over 4mg Ropinerole , Augmenting and now reducing my self down to 1.5 mg, thanks to the amazing info from this site. Jools and Sue have far more knowledge on RLS than any GP I get to see, when I do get to see them they virtually dismiss RLS. They have never monitored my symptoms or side effects from the dreaded Ropinerole.
I have decided to try see Neurologist privately ( I ‘m in UK ) My Ferritin level was 60 a couple months ago, GP says ‘it’s fine’ and dismisses me talking about iron infusion, insisting anything over 50 is good. He also isn’t willing to refer me back to NHS Neurologist at this time ?!
I am also on antidepressants (Sertraline ) and have been for many years. I know these are not good to take with RLS , What ones are ok please? I’m hoping the Neurologist will be helpful about iron infusions and willing to prescribe Opiods. What would you suggest work well alongside an antidepressant? As it is I can’t seem to reduce Ropinerole below 1.5, so figured I need something else to get me off them.
I would like to be able to go to a theatre, travel and do normal every day things without thinking how my legs will be and what I can wear on them. A full nights sleep would be so very welcome too.
Again, Thanks so much for this site.
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TobyTobias1
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For depression, ask for trazodone or wellbutrin. Since you can't get an infusion at this point, take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take them every other day or you can take them every day but be sure to take them at the same time at least 24 hours apart preferably at night since iron is absorbed better at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. Congratulations on reducing ropinirole as far as you have. As you have found out when you get near the end, reducing ropinirole becomes much harder. The normal advice is to reduce by 25 mg every 2 weeks, but you might want to try reducing by a smaller amount and wait longer between reductions. Wait until the increased symptoms from each reduction settle before reducing further. And yes ask for for a low dose opioid temporarily to help. Methadone, Tramadol or buprenorphine are commonly used. Mention pain and the new CDC guidelines on prescribing opioids if the doctor resists. You can also print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS on opioids to show him/her. You have probably seen my advice on starting gabapentin or pregabalin 3 weeks before you are off ropinirole and how to increase it.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Hi Toby ... I cannot add more that what Sue says below (she seems to have more experience and knowledge than the entire "patient accessible" medical teams have put together).
But I did want to say how much my heart felt for you when you said "I would like to be able to go to a theatre, travel and do normal every day things without thinking how my legs will be and what I can wear on them." If we book the theatre, all the time I am thinking "oh god, will it "start", will I be able to get through 2 hours". And then, if it does start, I know there is nothing I can do to stop it ... awful situation to be in. And flying ... anything under 5 hours and we always go economy ... stuck in those tiny seats ... RLS is almost instant. I actually dread holidays for this reason. And those awful coach journeys where they bus you to the hotel ... by this time I am in tears.
Thanks to this site, I learnt about augmentation (which I was experiencing quite badly), and am now taking 52mg iron tablets around 4.00pm, then 300mg Pregabalin at around 6.30pm, and just 0.125mg Ropinirole before bed. And generally I can cope with the residual RLS that I then have.
Now that I have reduced my Ropinirole, that does allow me to use in for "difficult situations" ... ie going to the theatre, going on long plane journeys - and that in itself is a miracle, because used like that, a small amount can be amazingly effective.
Regarding the anti depressants, I was on Citalopram (an anti depressant but used for HRT in my case) and I found that it did not increase my RLS, and now that I have come off it (over the last 2 months slowly) my RLS is the same.
So, thinking of you ... you are not alone, and it is an awful "disease" that is so poorly understood. Which is why this site and people like Sue, Jools, Madlegs, are a godsend.
I also take sertraline and it definitely exacerbates my RLS. Before taking the sertraline the RLS was under control by taking ferrous fumerate at night. As soon as I took sertraline RLS was through the roof. I’m now on the lowest dose of pregabelin at night which seems to be calming things down. RLS not gone completely but certainly better than it was. The dr is still reviewing me and I’m due to speak to her next week, so I’m thinking she may increase the pregabalin a little.
Toby-think about ordering red vein kratom powder (as tea from the netherlands). Joolsg has posted the site or I can send it to you. There is NO need for the rest of your life to be so miserable and fearful with no sleep! It works within minutes. Try it until you can get your meds fully set (and they actually WORK) or until you can get an opioid prescribed.
Glad you are trying it as at least you can get relief and do normal things again until you figure out your meds. Order the red powder, like red borneo, and also capsules, if they have them.
Does your depression appear to be related to sleep deprivation secondary to RLS ? Does your depression seem to wax and wane with the severity of your RLS or sleep quality. Did your RLS begin after you started an antidepressant?
I’m asking as my PLMD was unquestionably caused by Sertraline - 0 > severe 2 days after it’s discontinuation - as part of Antidepressant Discontinuation Disorder. I’ve also read studies that indicate that RLS can be caused by a variety of anti-depressants with the worst including Mirtazipine, Paxil, Effexor and Sertraline.
Maybe a very slow tapering off from Sertraline would be worth a shot? If you did this, it would be relatively safe to take Bupropion as studies mostly indicate that it has no effect, or even a positive effect, on PLMS.
Thank you all for your replies to my last post. All so helpful.
Just an update . I am now taking iron tablets on alternate evenings and for the last 6 nights have reduced Ropinerole to 1.25mg . I’m still waking with RLS in arms and legs and in the evenings …but managing and feel positive that I am moving in the right direction. Also trying to cut down on my evening eating binges as I know this will help but food has been my coping mechanism for so many years . I don’t think Anti depressants caused my RLS , but saying that I have been taking them for many years too. Previously taking Citalopram but can’t remember why it got changed to Sertraline?
Will carry on try to reduce Ropinerole over the next few weeks and hopefully will get down to less than 1 mg 🙏🏽
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