Help please.

[desparatedenise]

last night my right leg started jerking around 8pm. Had a bath with Epsom salts. Took medication around 9.30, legs still jerking in bed under weighted blanket. No sleep. Got up to read and do stretches. Waited until 1.30 to take extra codeine. Right leg continued to jerk. Had another bath with Epsom salts. Eventually went to sleep around 4.00am. So tired. Is there anything else I can try?

[SueJohnson]

1) Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 2) You could increase the amount of codeine you are taking. Usual effective doses are up to 180 mg 3) Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib... 4) You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Start with 75 mg and after 3 weeks increase the dose by 25 mg every 2 days until you find the dose that works for you 5) Are you taking any other medicines or OTC supplements? If you list them here I can tell you if any of them make RLS worse and perhaps can give you a safe substitute.

[desparatedenise in reply to SueJohnson]

Thank you! I had my ferritin levels checked 2 years ago and they were low. GP prescribed ferrous sulphate and they gradually climbed up. Last blood test 158. Is that too high? Is ferrous sulphate the best iron supplement for RLS? I will contact GP and ask for more codeine. I haven't heard of dipyridamole. I will check it out. I have been referred back to Brain Centre in Bristol but waiting for appointment. Other meds: levothyroxine 100mcg, lansoprazole 30mg, clopidogrel 75mg, simvastatin 40 mg. I think I may have tried pregabalin once. Can't remember when or what happened.

[SueJohnson in reply to desparatedenise]

No 158 is not too high. Mine was in the 500s. Ferrous Sulfate is fine. Unfortunately all of your medicines make RLS worse. And the only one where there is a safe substitute is lansoprazole which is an antacid. A safe substitute is Gaviscon.

[Jumpey in reply to SueJohnson]

Sue you give great advice and are a wonderful asset to this group. And I need to point out that PPIs don't necessarily trigger RLS.They don't for me.I have consulted with Dr.B and he agrees. Also saying that gaviscon is a safe alternative to GERD sufferers isn't true if the symptoms are severe. It's ineffective when used alone. It's like telling someone with severe RLS that co- codamol is a good option- the amount of codeine is unlikely to be effective .

[SueJohnson in reply to Jumpey]

Somehow my reply didn't take. I had said "Whoops - you are absolutely correct. My bad. PPI's do not make RLS worse, however they may affect the absorption of iron. I have 15 pages of medicines that are bad for RLS and I had made a note on all the PPI's except that one about this. "

[Jumpey in reply to SueJohnson]

Absolutely. It's important to keep a close check on iron levels when takkng them.

[Butterflysun1 in reply to desparatedenise]

re another response, Levothyroxine is simply a close to what you would produce yourself subsitute for what you are lacking. It should not make RLS worse & is 100% essential to your well-being and correct functioning of your body.

The others are tricky as you must have a significant need to be prescribed them. Gaviscon only works as a when you take it rather than actuality reducing acid levels to prevent ulceration or stomach inflammation.

If you are taking simvaststin & clopidogrel it sounds as if you have had or had significant risk of major cardiovascular or cerebrovascular disease so hard to justify a substitute but worth speaking to your drs.

If you need lansopraxole it suggests you have acid inflammation of your gut. This can lead to mini blood loss so you may well be short of iron again so do get this checked

[desparatedenise in reply to Butterflysun1]

thank you. I know that I need levothyroxine as my thyroid gland stopped working when I was in my 30s. The other meds were prescribed after the heart attack (apart from the clonazepam and codeine).

[SueJohnson in reply to desparatedenise]

See my reply to Jumpy.

[Joolsg]

Hi Denise,

Reading your bio it looks like you were on Pramipexole but it caused heart damage so you are now on clonazepam and codeine.

They're clearly not working.

You also mention ferrous sulphate worked brilliantly for a year. Clearly iron supplements help you and that is where you should start. Ask for a full panel fasting blood test.

Stop any iron supplements 2 days before the test. Raising serum ferritin above 100, preferably 200 resolves the majority of cases. You may even be able to get an IV iron infusion.

Hopefully the GP didn't prescribe Ropinirole or the Neupro patch as dopamine agonists are no longer recommended first line treatment by experts, although the UK is years behind best practice on RLS.

[desparatedenise in reply to Joolsg]

Thank you! My ferritin level was 158 at the last test. Is there a better iron supplement to raise ferritin levels? Do you know anything about magnesium supplements? I have just been out for a speedy walk in the rain. I need a walk every day but missed it yesterday due to being ill.

[Joolsg in reply to desparatedenise]

There are no studies that show Magnesium helps RLS but there are so many anecdotal reports of success that it is worth trying. I use Magnesium Citrate for constipation. Others recommend Magnesium threonate or citrate for RLS.

There are many studies showing that raising ferritin levels does help and taking on alternate nights raises levels more quickly.

The Mayo algorithm recommends ferrous sulphate but many people on here prefer ferrous bisglycinate (gentle iron) because it is less likely to cause constipation.

Your level of 158 is good but many people report they need levels above 200 or 300 to obtain relief. You may be one of them.

You could take ferrous bisglycinate 75mg every other night to see if it helps.

I attach a link to a UK case study where regular IV iron infusions help RLS by keeping serum ferritin above 300. You may be similar. If you can resolve your RLS by raising ferritin, it is far better than using medications.

ncbi.nlm.nih.gov/pmc/articl...

If raising ferritin doesn't help, then you may need to consider alternative meds like gabapentin or pregabalin or low dose opioids ( Oxycontin or Buprenorphine).

[Moonwalker1967 in reply to Joolsg]

My German GP gave me intravenous high dose magnesium and 10 sessions of acupuncture, neither helped unfortunately.

[TeddiJ]

Hi. I feel your hell and desperation...we all do! As I always suggest when people are in misery and need sleep: order either red vein kratom powder or hirsuta powder and take 1/2 to one teaspoon to start. You can research them both on this forum. They stop the rls within minutes, so are perfect for middle-of-the-night hell.

You are in the UK, I see, and Joolsg has posted about ordering kratom as tea from a nearby country-possibly Scotland? She has posted it several times on here and sorry I can't fully remember.

There is no need for you to suffer this much! Get the powder asap, however you need to get your hands on it, then follow all the other great advice above. Try to fix the medication triggers. Also check this forum for a new UK doctor-one who prescribes opioids for rls and also KNOWS what those triggers are. You could also try getting some THC to help with sleep and in some cases, THC helps with rls.

[Munroist]

I think you may be right to consider that missing your walk contributed to an unsettled night. I find a pretty clear correlation between getting exercise and sleeping well, about 10,000 steps is normally enough, and better done earlier in the day. Last night I squeezed in a late evening walk which got me to 7000 and I was twitchy and up 3 times until 4am. I tried magnesium salt baths and found they had no effect other than being very boring lying there for 20 minutes and given it costs a lot more now to heat a bath of water I definitely wouldn’t bother. I do take magnesium supplements “just in case” as I felt there was a slight benefit once but I’m not sure you can usefully absorb it through the skin.

[desparatedenise in reply to Munroist]

I had a energetic walk before lunch yesterday and slept until 4.00am. Bliss! Then I had to take another codeine, but I got another 3 hours sleep. I only have a bath with Epsom salts if my legs start jerking and it does seem to relax them usually. I will try magnesium supplements. Thank you for the advice.

[restlessstoz in reply to desparatedenise]

I wonder if it's the warmth from the bath that helps not so much the magnesium... or at least that the heat is an equal factor. If I've had a shocking attack of RL, then I'll have a hot bath and it will often relieve it- no magnesium. Just a thought. Good luck with your journey. I hope you can find relief.

I also find that a cup of coffee in the middle of the night if my legs play up will settle them down. Caffeine (and nicotine) are things that can either trigger or calm restless legs. In my case it calms them- caffeine anyway, I did try nicotine in the form of chewing gum but although it helped my legs, it gave me anxiety so I had to stop using it.

[Nanpat in reply to desparatedenise]

I noticed you said you took another codeine, what strength are they?

One 15mg tab doesn’t settle my rls but 2 definitely does. I now don’t mess around and always take 2 to knock it on the head…..so to speak

[Reader5]

I can’t use a weighted blanket bc it causes me to have restless leg. Hydrocodone helps, not codeine. Pramipexole works for me. So sorry you are struggling! I take extra iron, too.

[desparatedenise in reply to Reader5]

my daughter made me a weighted blanket. She calculated the weight it need to be and bought the beads. Then she calculated the weight of beads needed for each pocket, poured them in before stitching in place. I take it anytime we go away. No flying abroad for me now! Ferry and trains so that I can take it.

[Reader5 in reply to desparatedenise]

So sweet of your daughter. My blanket was not customized for me.

[K2D2]

Unfortunately, an iron infusion did not help me. However, Gabapentin has been the solution I needed. I take 300 mg each at 4 pm, 6 pm and 8 pm nightly and it has alleviated my restless legs. Wishing you all the best.

[SueJohnson]

My reply I made to Jumpey didn't take so you must have wondered what I was talking about. I have re-entered it, so you can now check it.