leg weakness following RLS bout

[WelbyB]

Has anyone else noticed leg muscle weakness following a night of RLS? This is a fairly new observation for me. I have had RLS for 30 years. Pramipexole worked great for 20 years before suspected augmentation. Currently, I take 1mg Neupro patch (3 months now) and 15 mg Methadone (one year) at 9pm. Lyrica and similar drugs just did not work for me. The muscle weakness is about 50 % causing a wobbly sensation. Balance issues are noticed as well.

[RestlessMe]

My legs definitely feel different after about a bout of RLS.

[SueJohnson]

You say Lyrica did not work for you. Was that because of side effects?

[WelbyB in reply to SueJohnson]

Lyrica 450mg was tried for about a year with no relief from RLS symptoms. Horizont and Gabapentin were tried one week with bad side effects. Loss of balance, nausea, and vision loss did subside with the Lyrica after a slower buildup. I have read that chronic dopamine adrenergic users like me often have ineffective Lyrica use. I wonder if another trial would be worthwhile after being off Pramapexole for two years. I could live with the side effects of Lyrica if it was actually effective for RLS symptoms.

[SueJohnson in reply to WelbyB]

No - I don't think it would work. Unfortunately that is one bad effect of long use of DAs. Have you had your ferritin checked?

[WelbyB in reply to SueJohnson]

I have taken so much iron that I face north full time. Sorry, bad joke. I know it helps a lot of RLS patients, but it has not helped me.

[grassgree]

How long does the wobbly sensation last? I notice that too, but it goes away quickly. The affected limb will be stiff and weaker than the other, but it resolves after walking around in the morning. If that isn't the case for you, it might be a good idea to mention it to the doc or see if it's listed as a side effect of one of those drugs.

[WelbyB in reply to grassgree]

Most of the wobbly and weak leg sensation goes away after a few hours. However, I have noticed that some of the weakness is now chronic and never subsides. It could be a side effect of the RLS medications. It could be the fatigue of those muscles chronically overworking. Another possibility is the insomnia that goes along with RLS.

[Asquiva]

Yes I always get muscle weakness before an RLS bout as well as a low back ache.

[CORFUORBUST]

I have extremely severe rls and plmd with all limbs, whole body and head jerking. The consultant said he's never seen anyone move so much while asleep. I've been struggling for years with wobbly legs, severe muscle pain in back of legs and feet, my hands also seize up all the time and often in bad pain. After seeing several neurologists they diagnosed FND. I lost the plot and have been fighting for years to get it removed from my records as I'm treated very differently now. My new consultant said its not FND as anything that happens while asleep is not under my control and definitely neurological. After pandemic I'm still waiting for an appointment and now waiting 3 years without any treatment. All the tablets give me side effects so I'm now smoking mj, didn't want to but without pain killer's what else can I do. Its the only thing that helps me sleep for a few hours. Maybe you also have plmd as I've always had bad legs since I got rls. Don't give up looking for treatment but don't hold your hopes up as this rls and plmd is not getting the recognition it deserves. In time hopefully.

[SueJohnson in reply to CORFUORBUST]

Are you taking any medicines for your RLS?

[CORFUORBUST in reply to SueJohnson]

Hi. I used to take tramadol from diagnosis until late 2019 when I suddenly augmented on it and had a rash on my hands, arms and thighs. They moved me onto oxycodone but they did the same if not worse. I have never tried the other usual drugs they offer as I have read the forums and the leaflets and the side effects are too much. So apart from the FND clinic offering me ropinrole for the 10th time, by letter, I have been prescribed nothing. The sleep clinic say there's nothing they can do for me and they know all the drugs they prescribe can cause issues. So I smoke a high thc before I go to bed. Other than that I take melatonin on and off as I've noticed now that I augment on it every few months. It helps me fall asleep but then it stops working and my legs go so crazy so I stop it for a week or so and try all over again.

[SueJohnson in reply to CORFUORBUST]

Melatonin is known to make RLS worse for most people. Ativan is a safe medicine for sleep and is not a benzodiazepine. You are smart to not take ropinirole. It used to be the first line treatment for RLS, but no longer is because of the danger of augmentation. Gabapentin is. Yes it can have side effects. But most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. And if the side effects are too much, it is easy to slowly get off it without any withdrawal symptoms so there is nothing to lose to try it, Unlike ropinirole you can't augment on it. And gabapentin can completely control your RLS as it has mine. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a... Also you should have your ferritin checked. when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably 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 have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Aujamw]

This is interesting because I have similar problems with leg weakness which severely impacts my daily life. I was thinking it was caused by the 1800 mg of Gabepentin I take daily. You indicated you don’t take Gabepentin or Lyrica. I feel wobbly and have balance issues as you suggest. I sometimes feel like I am not walking straight. I am searching for answers that doctors can’t seem to provide and if this is not being caused by Gabepentin in my case I would like to know why I am feeling this way also!