Thank you!

[Seahorse77]

I would like to say a huge and heartfelt THANK YOU to Sue, Jules, Chris and others who, through your advice and encouragement, have helped me recover - yes, recover! - from RLS. I suffered for over 20 years and was prescribed every Dopamine Agonist going, including patches which my skin was terribly allergic to. Late last year, having read many of your stories, and with my symptoms worsening, I realised I was suffering from Augmentation, and took Sue's advice to cut down slowly on the ropinerole and introduce Pregabalin, which actually only took me a couple of months. I now have a sympathetic and enlightened doctor here in Kent, who listened to all the advice on the forum, and also prescribed me zoplicone sleeping tablets to get through the worst of it. I know many doctors won't prescribe them because of the danger of addiction, but I could not have managed without them. I still having trouble sleeping - I have done so all my life due to a 'busy brain' but, without the torture of restless legs any longer, I just put up with it. I take 200 mg of Pregabalin at night and 50 mg in the morning. It took a while to get the dosage right, and I know I can adjust it if needs be. Without everyone's help and advice, I would be taking larger and larger doses of DA's and plunging into deeper and deeper despair. My thoughts and prayers are with each and every one of you as you struggle with this awful condition. I know the medication I take will not work for everyone, and many of you are on a long journey to find out what works for you. My advice is: It is CRUCIAL to come off DA's, find a doctor who will listen, take sleeping tablets if needs be and never give up hope! Thank you once again - you are life savers!

[Madlegs1]

Delighted for you!👍💚

Regarding the sleeping issues, I had problems for years, and finally got help from this site.

I downloaded InsightTimer app onto my phone and listen to any number of meditations, visualisations and therapeutic encouragement.

I work it with a sleep timer widget which allows me to set any length of time, before switching off the phone.

I'm usually asleep well before it ends.

Hope that is of some help.

All the best.

[Seahorse77 in reply to Madlegs1]

Thank you, Madlegs! I'll try that.

[SueJohnson]

That's great! So pleased for you.

[SueJohnson]

Would you mind sharing your doctor's name so we could recommend him/her to someone else who asks.

[Seahorse77 in reply to SueJohnson]

Yes - he's Dr Fernando at Chestfield Medical Centre, Whitstable. He listened to me and was guided by the advice on this forum. I only wish all doctors were as receptive!

[Marlayna67]

so nice to read that you found the help you needed among our friends here. This group is truly priceless and I appreciate every contribution I read.

[Baldrick123]

Great news Seahorse77! I have saved your message to show to my doctor. Currently I am on something called "Reforce" to raise my iron but she was reluctant to start me on Pregabalin, saying something like "it's not the miracle drug people first thought it was". I am still on 2mg of Ropinirole (DA) per night. It does kind of work but tends to make the RLS a bit worse before it kicks in, and if I ever forget to take it I suffer really severe withdrawal effects. One time I broke my ankle just from forgetting to take it and falling down. It really is a horrible drug.

[Virginic in reply to Baldrick123]

Tut tut your doc! Pregablin may not work for everyone but you might well find it works for you. All the best to you and I hope you manage to find a much better way out of your RLS symptoms.

[SueJohnson in reply to Baldrick123]

How much elemental iron does your reinforce iron have in it?

Have you had your ferritin tested?

[Baldrick123 in reply to SueJohnson]

Hi. The "Forceval" capsules (1 per day) contain 12 different minerals, including 12mg of Iron. Many of the minerals are in greater proportion than the iron (Calcium 108mg, Phosphorous 83mg, Magnesium 30mg, etc). The box says they are available without a prescription so I think I've been fobbed off by the doctor quite frankly. My ferretin was down when started on these and a blood test since did show it going up a bit.

[SueJohnson in reply to Baldrick123]

Oh dear. Looking it up it is really just a multivitamin. 12 mg of iron is not near enough to have any real effect on your ferritin. And it contains magnesium which should be taken 2 hours apart from iron. And it shouldn't be taken every day as you absorb more taking it every other day.

Here is the normal advice.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor.

Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Madlegs1]

She has you on Ropinerol but won't change to Pregabalin??

So Rop is a miracle drug, according to her logic??

Oh-- by the way- you are starting augmentation, and I suggest you read up some of Sue Johnson's replies to many posts to decide what to do now.

Good luck.

[Baldrick123 in reply to Madlegs1]

I have probably been having augmentation for a lot longer than you think as I've been on Ropinirole for about 20 years! Doctors think RLS is a minor inconvenience and are stuck in their ways. When I was prescribed back in 2004 Ropinirole wasn't even on the books for RLS - my doctor just prescribed it as another patient of his with RLS had benefited from it. Even then though, he said the other patient had to keep taking higher and higher doses and eventually got off it.