please help

[Ladytaf]

I’m new here and I’m really struggling with restless legs and arms and night sweats. I’m not sleeping and as soon as I relax arms n legs play up then I get hot and cold and clammy. It’s driving me crazy. Went to Gp today and he’s started me on HRT patches. Any advice pls? I need sleep

[Madlegs1]

Is he treating you for menopause? Not RLS.

Hrt medication generally causes RLS, so you need to be clear exactly what you have!

How was the RLS diagnosed?

What other medications are or have you been on?

Looking forward to your reply!👍💚

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

HRT as Madlegs says make RLS worse.

First lets check if you do have RLS. You may have PLMD.

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.

PLMD is when your legs and sometimes your arms move by themselves - usually in your sleep but can also occur during the day.

Regardless they are both treated the same way.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

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 ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)

Most of the side effects 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 (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse including for anxiety and depression. If you are taking any I may be able to provide a safe alternative.



[Ladytaf in reply to SueJohnson]

It’s restless legs. I told my gp this but he says it’s the menopause. I was diagnosed by a gp just before I was put on ropinerole. It has worked up until now. Used magnesium spray which I bought yesterday but it didn’t do much. I only had 3 hours sleep last night and not slept well in days. He won’t give me a blood test coz he thinks it’s not necessary as I had a blood test back in April. I’m at my wits end feeling so depressed and actually shattered.

[Joolsg in reply to Ladytaf]

Aha.So you're on Ropinirole. What dose & for how long.

Ropinirole actually causes severe worsening of RLS known as Augmentation.

Did your GP warn you about this?

[SueJohnson in reply to Ladytaf]

Since it is no longer working you are suffering from augmentation and need to come off it as it will only get worse.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

As I mentioned Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Start gabapentin or pregabalin 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. See my further instructions on this above.

Insist on a full panel blood test as I described above. It is not the same as a normal blood test as that doesn't test for ferritin.

It sounds like you need a new doctor. What city do you live in. I may be able to give you the name of a knowledgeable one.

[GrandmaKarey in reply to SueJohnson]

I’m sorry to piggyback on this reply, but I think it was you that linked doctors that specialize in RLS. I can’t seem to locate that link now, could you please tell me what it is?

Thank you in advance!

[SueJohnson in reply to GrandmaKarey]

It was probably rls.org. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. If it is a person that submitted the name they might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and up-to-date is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.

I have a list of doctors in various cities that I know are knowledgeable so if you tell me where you live I may be able to give you the name of a good doctor. I also may have more information on a doctor on the rls.or list.

[Joolsg in reply to Ladytaf]

Here's the info on augmentation and a withdrawal schedule on RLS-UK website.Join RLS-UK and you can help research and attend the AGM to learn about latest research and treatments.

Ropinirole and other dopamine agonists are no longer prescribed by experts. Sadly, there are no experts in the UK and RLS isn't taught at ANY stage in medical training, hence poor knowledge and bad treatment.

Follow the withdrawal schedule and once off Ropinirole, your RLS will improve. Withdrawal isn't easy! So be prepared for a very difficult time. But it's well worth it.

rls-uk.org/augmentation-reb...

rls-uk.org/useful-resources

[Joolsg in reply to Ladytaf]

healthunlocked.com/rlsuk/po...

And please fill out this survey so we can force doctors to learn about the dangers of Ropinirole and Pramipexole and stop them prescribing these drugs.

Also complete the Yellow Card Scheme so doctors realise there are tens of thousands experiencing severe RLS because these drugs have worsened their symptoms.

bnf.nice.org.uk/medicines-g...

[Delilah162 in reply to Ladytaf]

Aww you sound like me! I’m 52 and perimenopausal with severe rls and plmd. You sound like you’ve got both to me. I hear you it’s completely exhausting isn’t it and the general pop just don’t seem to get it. I saw my neurologist last week and he said I’m augmenting (I’m of pramipexole) I’m now in the process of coming off the medication. Take the advice from here and get off it. Really push for your iron to be checked after months of iron mine is still low so possibility of iron infusion has been mentioned for me. I take HRT and have noticed no difference in my symptoms they were as bad before taking it! I take it as it helps with all the other symptoms which are bad enough to deal with without rls and plmd on top. I wish you all the best. ☺️

[Bieler]

I would suggest getting off ropininole and see if your GP will give you Tramadol. It’s a Godsend. You can read about Tramadol on this forum. I feel for you as I’ve been in your shoes. Tramadol has given me back my life.

All my best to you.

[Ladytaf in reply to Bieler]

I can’t take tramadol

[Bieler]

Also, please read the others advise on triggers. I would have terrible flare ups if I consumed aspartame, sucrose and antihistamines. Horrible nights even if I took my tramadol. So I stay away from any of the triggers that affect me.

[SueJohnson in reply to Bieler]

The older antihistamines definitely make RLS worse but the newer ones are safe if you still need one - OTC Claritin, zyrtec or allegra or prescription Clarinex

[Bieler in reply to SueJohnson]

Oh really? Thats good to know. I had an allergic reaction to a new laundry detergent a few weeks ago. Washed my sheets and my whole body broke out in hives and swelled. I took Benadryl and as I felt the tingling of the allergy subside; I then felt my legs and then arms with the worse RLS pain and jumping. It was an awful night.

But I also take Xyxal every now and then and I noticed that when I take that I have a bad night and even a bad day.

So is Benadryl what you consider an old drug? How about Xyzal? Do you know? Thank you for the info. I may try Allegra when needed. I just know that I feel really weird on antihistamines.

I appreciate you.

[SueJohnson in reply to Bieler]

Benadryl is an older drug and makes RLS worse for most but Xyzal is not as old although still might cause RLS to be worse.

[Ladytaf]

I’ve been up all night due to a restless arm. Does anyone get it in their arm as well as legs?

[Birdland]

If I were you I’d wait till you are off ropinirole and your RLS has calmed down to try the HRT patches. That is if you plan on trying them at all. If in fact HRT makes your RLS worse, as it did for me, then your ropinirole withdrwl will be more difficult.