I am brand new to this so please be patient I have RLS for about 2 years and it seems to be getting worse every week. It’s so bad now that I’m lucky if I get 1 hour of sleep a day and mentally it’s getting tough as well as physically!
I like my doctor, but she doesn’t seem to know how to treat this. She has tried different types of meds ( Gabapentin, Ropinirole, and Pregabalin ) but nothing seems to work. She also sent me to a neurologist for tests.
At the end of December I had to get shoulder surgery and was given a script for pain medication. While I was taking that I had no problem with my legs at all... none. The problem is ,and I get it, doctors are very reluctant to prescribe them because of the dependency issue. Are opioids the answer? I also saw that some people have gotten an “infusion”. What is that about?
Reading all these posts from other people who have the same problem is weirdly somewhat comforting. I had no idea this problem was so widespread.
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Buckem
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You may possibly be experiencing augmentation ( search or see pinned posts on this page) if you were on Ropinerol for a while.
Infusions are for iron - only for a certain cohort who may be deficient in serum ferritin ( below 100) and for whom a raised ferritin level may be beneficial. Not everyone is !!!
Come back to us if you have more questions, and have seen if augmentation may be your issue.
All the best.
Hi welcome to the forum. I hope you find the answers you're looking for on this site.
If the pain medication you received after your surgery was an opiate, then this will explain why it relieved your RLS. As Madlegs says, an opiate may be the ultimate answer especially when first line medications, dopamine agonists or gabapentinoids have failed, as in your case.
I am presuming you have now stopped taking an opiate for post surgical pain. In this case, your increasing RLS may be due to opiate withdrawal effects.
The opiates used for acute pain aren't quite the same as those used for RLS and it's good that you're seeing a neurologist because the doctor who referred you may refuse to prescribe an opiate for RLS.
I'm not sure where you live, members of this forum come from all over the world and practices and health services differ.
The "tests" the neurologist will carry out will presumably include blood tests. This should include serum iron, ferritin and transferrin.
This is because these indicate your iron status. Low iron levels, in the BRAIN, are a significant factor in RLS. This can happen even in the absence of iron deficiency anaemia, so blood tests simply for that will be insufficient.
The often quoted guide for RLS sufferers is that ferritin levels should be at least 100micrograms per litre (mcg/L). Up to 50% of RLS sufferers apparently benefit from raising their ferritin level over 100mcg/L. Hopefully your neurologist will know this as "normal" ferritin levels are considered to be much lower.
Some, RLS sufferers benefit then by having extra iron. There are problems with taking oral iron supplements as the body has a way of limiting how much you absorb.
Having iron intravenously, an "infusion" is an easy way of ensuring extra iron bypassing the gut. However, they do have their own problems.
Hopefully, you have been advised there are other things you can do to manage your RLS. There may be some other underlying conditions causing your symptoms, which hopefully the neurologist will eliminate.
It has been found that people with RLS and a vitamin B12 or vitamin D deficiency, can benefit from taking supplements of these. But only if there is a deficiency.
Furthermore, there is quite a long list of other things which are known to make RLS worse, in which case RLS can be improved by avoiding them.
First I would like to thank you for all the excellent advise and informative tips you give everyone on this site. You must spend a lot of time on it. It is appreciated as it is for everyone else who offers help!
I would like to give an update on my progress so far. I had my appointment with my neurologist and he was surprisingly receptive to the information I went armed with. He agreed with everything I have learned here and I’m happy with his approach to helping me cope with this awful problem. He has completely taken over my treatment. I will continue to post my status in the coming weeks.
I do however have a question. Is it possible that switching from Clonazepam to Sertaline for anxiety could have triggered RLS? Approximately 2 years or so ago my GP quit and her replacement decided to change my meds. Not sure why right now but it seems like that’s about the time when this all escalated. I thought I read a post of yours where you addressed this.
Great news that your neurologist has been so good.
Sertraline, being a Selective Seritonin Reuptake Inhibitor antidepressant can trigger RLS. SSRIs are renowned for it.
So are tricyclic antidepressants.
My own RLS was significantly worsened by Citalopram, another SSRI followed by Mirtazepine causing me to seek meducal treatment in 2009 for the first time after having had RLS mildly for decades.
Hi Buckem. My sympathy goes out to you. It's bad enough having RLS, but the sleep deprivation this causes is dreadful to cope with. I saw a Neurologist and he said he wanted to have my Ferritin levels checked, as lack of Ferritin can affect RLS. It turned out my Ferritin levels were very low and I was put on a course of Iron tablets. These have had a really good effect as I no longer feel weary and tired, and it has helped my RLS. So, I would ask your Dr to check your Ferritin levels for starters. The Neurologist also suggested that I take Co-codamol as well as the Pramipexole that I have been taking for 9 years. The Pramipexole had ceased to help with my RLS, but that was because I was on too low a dose. My Dr prescribed the highest does I could take for the condition and, since, then, I have had no problem with my RLS and I'm sleeping well at night. I know Drs don't like prescribing opiods, (Co-codamol) but if it helps, then you should be taking it, and you will just have to be strong when discussing this with your Dr. Not all GPs know a lot about RLS, you will just have to stress what a horrowing condition it is. I do hope you can get your Dr to understand. I also hope my advice might be of some help to you - anything is worth a try. Good Luck.
I have another appointment with my neurologist Thursday and I am preparing my case using a lot of information from these posts. I think my G P is not very well informed about RLS, not so for my neurologist. So I think my future scripts will come from him.
I have certainly have learned a lot from these posts and am very grateful for all the advise ….Thanks to all
Try taking iron tablets, my restless legs are awful when I dont take iron. But this week I've been taking them regularly and its easing off quite a bit.
Try it for a week and see if you have any results or change in your symptoms
I don't think that you can expect too much improvement from taking iron tablets for a week. It's unrealistic. The problem with iron and RLS is that it's strongly associated with brain iron deficiency, not necessarily iron deviciency anaemia.
The issue is indicated by a low ferritin level as Marmaset says.
You can raise ferritin levels by taking oral iron, but it won't happen in a week nor perhaps months.
This is particularly because it's quite difficult to absorb oral iron, most o f what you take can pass right through.
Iron isn't like a drug that gets easily absorbed and starts to work in few hours. It's much more complicated than that.
I started taking iron as soon as I read about it here so at least two weeks ago. My neurologist agreed that my ferritin level needs to be checked. He also suggested I double my intake of Pregabalin to 150 mg which has made a difference already. Now my legs are much better but I still can’t sleep. Doc said that might happen, but much easier to fix than rl. I now think I need to get off my current anxiety meds and try something else. Looks promising 💤
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