I have been on this site so many times. My RLS started when I was 20, I am now 78. Suffered a lifetime. At the time doctors didn't have a clue, never heard of it! As I got older the worse it got.I have seen every specialist over the years. No answers. They didn't know how or why.
Unfortunately things are no better today and so many suffering.
I alternate between Ropinerole and pramipexole. This last 12 months things have calmed down and hopefully now go away. I have waited long enough. I too have spent in the past walking the floor from 6pm until 6am next morning. Not able to stop moving. Continually walking around. What a nightmare. Still taking, at the moment pramipexole but suppliers didn't have any for my pharmacy this week. Will have to speak to my doctor to change my prescription over to Ropinerole. Again. Good luck everyone.
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cumoneileen
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Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS and is especially important for people who augment on dopamine agonists. If not, when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
So sorry to hear of your long torment Eileen. But it's good to hear that things have calmed down in your last 12 months. We appreciate your warm wishes, and reciprocate the same. You are not alone in your sleepless nights, please believe me
Rather than changing your prescription which targets relieving the symptom and not treating the cause why don't you try to reduce your systemic inflammation? Systemic inflammation causes the nerves to become hypersensitive which is the leading cause of the sensations that cause rls. Systemic inflammation is mostly caused by eating refined carbohydrates like white bread and sugar, fruit juices and refined seed oils found in processed food.
thank you Eryl, I am from today starting a new eating regime. Cutting down and cutting out in some parts of my diet. Mainly to loose some weight, can't go on a strict diet, I know I couldn't keep it up. Hopefully it might help with RLS. Although at last after so many years of everything concerned with RLS things seem to be settling down. 58 Years of sheer hell .I am getting some peace . And now its recognised more help is out there.
Have you read any of the posts here about the dangers of pramipexole and ropinerole? They are both dopamine agonists which will make your symptoms worse over time. The first line treatment for RLS is now gabapentin or pregabalin, but you must first wean yourself off the dopamine agonist. Do it slowly, dropping by 0.25 mg every couple weeks.
You may want to read this info from the Mayo Clinic and forward it to your doctor;
thank you so much for your very informative email. I have printed it off and see what my GP thinks of it. Had years of same tablets because that's all they knew. So many people now suffering, at one time I was very much in minority. Now they have to sit up and take notice. It has blighted my life, awful. Travelling, etc. just being able to sit of an evening and watch something on TV. Now I just want some peace. PLEASE.
I totally agree with grassgree. Ropinirole and Pramipexole are no longer prescribed by experts. Switching between the two doesn't seem to be helping you if you still have uncontrolled RLS.UK GPs aren't taught about RLS or the dangers of these drugs or how to safely get you off them.
Pregabalin and gabapentin are now first line drug treatment if raising iron levels doesn't help, but they do NOT work while you're still on Ropinirole or Pramipexole.
Read grassgree's link to the Mayo guidelines and look at the article below, by a top RLS expert, about dopamine agonists, which explains why they stop working and you will need to switch to alternative meds. Withdrawal is really, really tough but once you're off Ropinirole and Pramipexole, the RLS severity reduces dramatically.
Hopefully raising serum ferritin above 100, preferably 200 will also help and if pregabalin doesn't work after 2 or 3 months, low dose opioids are highly effective.
As you're 78, you deserve some respite from severe RLS. It can and does happen if you find the right combination of meds. Ask your GP to read the Mayo Algorithm and the article on the very common dangers of dopamine agonists.
Hang on in there, more help now than there has ever been. My 58 Years of RLS baffled GP and specialists Far more awareness these days. Going to speak to my GP. (I should be so lucky) about all the years I have been on same tablets. Ropinerole and pramipexole! Good luck.
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