Stll have RLS after 40 years

Hi .

For most of my life I have suffered with RLS. have been checked by doctor, but , just confirmed I have it.

It come on after about 30 to 60 mins after going to bed. I then get up, take 2 Paracetamol and then go back to bed. After about ten minutes, I can usually fall asleep. I do find that just a little walk around the house for 5 mins then back to bed, sometimes work. I am very interested to hear that cannabis can help. I do not smoke but, maybe, going forwards, this may be available in another form.

Looking forward to a cure.

[Madlegs1]

From your description, it does not sound like RLS, especially if paracetamol relieves it.

What exactly are your actual symptoms?

Do you have the uncontrollable urge to move your legs?

Especially on resting?

Love to hear back from you.

[Hidden in reply to Madlegs1]

I visited the doctor, and she said it was RLS. I have to move my legs to relieve the pain. I try to ignore it, but it does not go away. Then a walk around the house does the trick. The pain tablets do not work every time.

[SueJohnson]

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If it is RLS 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 numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then 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 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 and preferably at night 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. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. 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. 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...

[StJulian1305]

I too have RLS, never been diagnosed, I’ve had it from age 10, and now 70. My husband has actually tried to stop my legs moving jumping dancing, with ace and pain, but to no avail. Painkillers, hot milk etc to go to bed. The doctor told my mum in 1960 I had growing pains. Must be still growing. Go to cinema and legs always on the go, I could go on. I have just come off amitriptyline after 20 and legs SEEM a little better. I have tried to hold my legs down myself in the night, but no joy. Never been able to sleep, two nights wide awake , then a couple of nights on sleeping tablet. Now CBD OIL. I could go on about my R/leg’s My long story is to you. Each person is an individual, not one alike. So to say to the gentleman you havnt got r/legs, you might as well say that to everyone who has a headache, back ache etc, no you haven’t got that. Sorry to say this. But each to our own. 👍

[Madlegs1 in reply to StJulian1305]

Thank you for your input.Growing pains are a constant diagnosis from doctors.

The reason I questioned the rls diagnosis with the OP is that paracetamol does not relieve rls, as it seemed to in their post.

If we are to give true and helpful advice here, then it must be based on patient experience and our limited medical knowledge. ( Which in many cases is far better than the medical profession)

One good diagnostic tool for RLS is to administer something like Pramipexol for a few nights. If that immediately relieves the symptoms, then that's a pretty firm indication of true rls.

The danger of misdiagnosis is that some other "disease" is being missed. - MS, neuropathy or thyroid.

Better safe than sorry.

Cheers.

[SueJohnson in reply to Madlegs1]

See my reply to StJulian. A DA feels so good.

[SueJohnson in reply to StJulian1305]

Madlegs 1 suggested you try pramipexole to diagnose whether it is RLS. However there is a HUGE DANGER there. If it works you won't want to come off it. But up to 70% of people with RLS will eventually suffer from augmentation on it and if you take it for many years before this happens, you may have permanent damage to the dopamine receptors and gabapentin which is the first-line treatment for RLS may not work. See my reply above on having your ferritin tested and trying gabapentin.

[Madlegs1 in reply to SueJohnson]

Absolutely!I should have added that proviso as a rider.

But I felt my answer was long enough without adding further information.

The DAs should only be used for the few days to help diagnosis, and then switch to the alpha2 ligands. Plus all the trigger findings and iron exams. Etc.

[LanaCSR in reply to Madlegs1]

Yes, Madlegs1, your answers are very helpful and we all I'm sure appreciate that you keep them brief as opposed to "others" on here. And you personalize your replies to the person asking the questions without just cutting and pasting lines and lines and lines of the same old information that most of us are tired of reading. So thank you for that! 😊

[Eryl]

Be aware of the fact that your solutions only cover up the symptoms and do not address the cause which most often is due to inflammation of the nerves. That inflammation is often caused by your diet. The most likely culprit is refined sugars and starches and refined seed oils or in rare cases may also be caused by oxalates, nightshades, silicates or in very rare cases heavy metal poisoning.