Relief at last from RSL: Relief at last... - Restless Legs Syn...

Restless Legs Syndrome

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Relief at last from RSL

Nahfranz profile image
17 Replies

Relief at last for my hubby who has suffered with RLS for more then 30 yrs to the point of not being able to sleep or sit down for as long as 52 hours at at time sometimes.

Horrible torment. But 3weeks into taking Liquid Magnesium and Liquid Iron and of course lots of prayer he has had almost total relief for 10 days now for the first time, when he thought exiting life would be the only answer because of serious sleep deprivation and not able to be part of life and always sedated on Ropinirole which he has cut back on now to 5mg @day from 8-10 mg @day. Amazing to see him get life back in his eyes and all around again.

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Nahfranz profile image
Nahfranz
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17 Replies

Hi Nahfranz, glad to hear your hubby is on the mend. One recommendation I have right off the bat is to take the magnesium at least two hours away from the iron. I love iron for RLS, it is my drug of choice - see my profile page. Another neat little trick that people on here are finding effective is to stop eating all together after about 7pm and fast until breakfast time.

Is your husband on anti-depressants or statins or antacids like tagamet? These substances can make the SYMPTOMS of RLS worse than they have to be. I believe even Metformin can do this. Unlike the DAs, these substances do not make the RLS itself worse. The DAs down-regulate our already pathetic dopamine receptors as time goes on, thus making the RLS itself worse, in addition to the symptoms. RLS is just another way of saying we have an inferior dopamine transport system. Dopamine is what quiets our arms and legs. Not only do we have a lousy dopamine transport system, but our brain is always low on iron and that iron is what keeps our dopamine transport system limping along. When the iron in our blood drops at night (everyone's serum iron does) our legs tend to go a little crazy.

As your husband continues to lower the amount of DAs it would be a good idea to talk to his doc about a substitute RLS med. It seems like doctors are very willing to prescribe Gabapentin or Pregabalin, but not low-dose methadone or low-dose buprenorphine - both of which are kind of like a miracle in handling any withdrawal symptoms once the DAs have been completely stopped. Someone will be along here hopefully to explain more about the best way to taper the rest of the way off the drug.

Not sure what happened 30 years ago to your husband, when he was probably pretty young, to make a doctor prescribe a DA?

Marky1017 profile image
Marky1017

what brand of liquid iron and magnesium does he take and where do you get it? I have trouble with iron supplements in general due to constipation. However I need to get back on iron and magnesium. If this works for him I want to try it as well. Congrats on success fighting this terrible condition.

Boldgirl45 profile image
Boldgirl45 in reply to Marky1017

Also would like to know this :-)

LanaCSR profile image
LanaCSR in reply to Marky1017

Me, too!!

Joolsg profile image
Joolsg

The reason your husband is suffering so badly is the Ropinirole.Ropinirole works at first, then causes augmentation of symptoms so doctors increase the dose which makes the symptoms even more intense and they start earlier in the day.

Read all you can about augmentation of symptoms.

rls.org/treatment/managing-...

The new Mayo algorithm written by the world's top RLS experts now makes it clear that Ropinirole and other dopamine agonists should not be prescribed because augmentation rates are too high and cause too much suffering.

Your husband has had a brief improvement because he's reduced from 10mg to 5mg of Ropinirole and has raised his iron. Sadly, it won't last and the augmentation of symptoms will start again soon.

The only solution is to very slowly reduce the 5mg over a minimum period of 6 months. Reduce by 0.25mg every 3 weeks. Many of us have been in his position and managed to get off Ropinirole. I was on 4mg for over 10 years. I am now RLS free and sleeping every night. But withdrawal from Ropinirole was hellish.

You should get full panel iron bloods taken and ask for the actual numbers for serum ferritin, serum iron and ensure you raise ferritin to over 100.

Replacement meds should be discussed with your GP. Pregabalin is now first line treatment. If that doesn't help, low dose opioids can be prescribed for severe, refractory RLS.

Read all you can because doctors know very little about RLS. If they did,your husband would never have been prescribed 10mg Ropinirole- that's 10 times the maximum dose for RLS now recommended by experts.

I attach the link to the new Mayo algorithm.

mayoclinicproceedings.org/a...

Bganim1947 profile image
Bganim1947 in reply to Joolsg

Hi Joolsg, haven’t been this site for sometime now, but I’m happy to see you are still here helping the newbies. I concur with everything you said. You and a few others are the ones who stayed with me and guided me through my titration off Ropinerol and my eventual withdrawal. It was awful, but worth it. Those DAs should be taken off the market. The meds suggested by you and others about 4 years ago worked beautifully. They are 100 mgs of Pregabalin and 100 mgs of Tramadol.

I do have a new question: Four months ago I had a total knee replacement. During my recovery from surgery, they put me on oxycodone. I had to stop using tramadol, because I couldn’t be o 2 opioids at the same time. The surgeon thought the Oxy would do what Tramadol does to manage my RLS symptoms, it didn’t. As my nurse explained Oxy and Tramadol work with different brain receptors. As a result, I went through a terrible time — my RLS symptoms came back full strength within one day of being off the tramadol. I was still in Lyrica but tramadol seem to be the most important part of that combination of meds.

I was off tramadol for 17 days; it was hell. When I was able to go back on it after I titrated off oxycodone, my RLS symptoms subsided. It took about a week, but after that I was feeling great again.

Now I’m facing another surgery with my other leg in the spring, and the doctors don’t know what to do for my post surgical pain, because tramadol isn’t strong to manage the post surgical pain. So, how do I stay on tramadol and deal with the additional pain of surgical recovery? Any advice from you or others would be helpful to get me through this next surgery. Thanks again and happy New Year to all.

Joolsg profile image
Joolsg in reply to Bganim1947

Hi Bganim,Lovely to hear you are doing so well on Pregabalin and tramadol.

You are right about different opioids affecting different receptors. We all respond differently to them as well.

Just a thought about the worsening of your RLS when they switched you to Oxycontin. When they perform surgery, most anaesthetists give anti nausea/emetics that trigger RLS. We have to ask the surgery team to give us safe anti nauseates like Zofran.

It may be that it was the anti nausea meds that triggered the worsening of the RLS.

However, if you were on Oxycontin for over two weeks following surgery and it didn't cover the RLS, then I can only suggest you speak at length to the team and ask whether you could use the Oxy for a shorter time and then transfer back to tramadol. Another possibility might be medical cannabis for the post operative pain. I know most UK doctors don't like medical cannabis but it is used very successfully for pain and can be used with Oxycontin.

It's a bit of a dilemma.

Bganim1947 profile image
Bganim1947 in reply to Joolsg

Medical cannabis is a great idea. I'll speak with my surgeon. I don't think cannabis is a big problem here as it is legal and quite accessible. It's just finding the right kind or grade—not sure what that's called—but we do have what are called Compassion Centers where professionals will counsel the patient and recommend the correct kind to use.

I was taking Oxycodone, not Oxycotin—don't know if that makes a difference. I did talk with the anastheologist prior to surgery and I did ask him to use Zofran, remembering the someone on this site recommended that a while back. My surgeon finally understands now what a hard time I had with my RLS during recovery. He has been trying to find a way around the Oxycodone situation. He is recommending I try Radio Frequency Ablasion—have you heard about that? It's a process when weeks prior to surgery a pain management specialist puts three needles in three nerves and using radio frequency burns the nerves so they no longer conduct pain. They are using it to get around the opioid situation. Apparently from what I've read it is very successful treatment that can last 6 months to a year. My surgeon believes this will significantly reduce the pain I'll experience post surgery, so I can still stay on Tramadol and pregabalin and not have to take Oxycodone. Have you heard of it?

Joolsg profile image
Joolsg in reply to Bganim1947

I haven't heard of radio ablasion therapy but it sounds brilliant. Deal with the pain at nerve level.I hope it works.

rls-insomniac profile image
rls-insomniac

I second what Joolsg has advised. I too was taking up to 10mgs of ropinirole per day and was suffering with terrible augmentation. Reducing down to 5 mgs is not easy, so well done on getting this far. I found that once I had reduced down to 4mgs my symptoms were horrendous and I needed help from my GP. I got the help eventually after I threw my toys out of the pram! He prescribed low dose opioids to help with the withdrawal symptoms and I had a hellish time of it. If you do decide to reduce the ropinirole further, do it very slowly as suggested by Joolsg. I did manage to wean myself off ropinirole altogether in the end. Life is much better without ropinirole!

Irmajs profile image
Irmajs

Your husband needs to continue to slowly decrease his Ropinirole until he is off. It’s a horrible drug and causes augmentation (RLS day and night) after awhile. Also the dosage he was and is still on is incredibly too high. For RLS they say the dosage should never be above 3-4 mg. I experienced terrible augmentation on Ropinirole and when I got off, my RLS went back to only being at night and evening. Even that was a big relief. I have chosen to control my RLS with CBD and it works most nights. I would love to try some of the ones mentioned above but in the US it is hard to find a doctor that will prescribe them. I do also take iron with vitamin C.

Munroist profile image
Munroist

Fantastic. Loads of good advice below but it’s just great to hear that he’s had some relief.

Cowbsky profile image
Cowbsky

_ Hi,

_ nice to hear this!

_..."and of course lots of prayer": love this part :), which is in line with techniques (not exactly prayer, however kind of similar science-based energy manipulations, etc) I have been using succesfully since some 1.8 years.

all the best and good luck

Readtimmy profile image
Readtimmy

I would like to know the name of the liquid iron and magnesium ALSO! I know people swear by CALM a powder magnesium you dissolve in water.

macramegirl profile image
macramegirl

I am so happy that your husband has found relief! RLS is truly torment! How much liquid magnesium does he take? Do you think magnesium in tablet form would be as effective? How much iron?

CookiePooki profile image
CookiePooki

I think whatever helps to go for it. God can heal anyone if it's His will. Give God the glory for your husband's relief

Arymretep profile image
Arymretep

Was your husband prescribed this by his Doctor 🤔

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