Looking for Ideas please

[Bramblespaniel]

Hi there, I have had RLS since my early 20s and am now 56. My symptoms have got worse over the years and I have been managing them with stretching, holding legs in the air, kicking legs out, compressing blood supply to offending leg for short periods, plus various supplements, mainly magnesium. Symptoms vary but on a good day I have to get up twice a night and 6-10 times a night on a bad day with symptoms going to arms as well. I’m looking for any other ideas before resorting to medication as the side effects look frightening! Any ideas gratefully received.

[Joolsg]

The first thing is to read the Mayo Algorithm, written by the world's top RLS experts.

mayoclinicproceedings.org/a...

Before starting medication you should get a fasting full panel iron blood test. Serum iron should be above 60 and serum ferritin above 100, preferably 200 for RLS. Raising ferritin levels helps the majority. Oral iron supplements raise levels more slowly than IV iron infusions.

Then ensure you're not on other meds that trigger RLS like sedating anti histamines, anti depressants, statins, beta blockers or PPI gastric meds.

Read and research all you can because RLS is not taught in the UK at medical schools so GPs have very little knowledge and rely on NHS and NICE guidelines which are years out of date & still recommend dopamine agonists as first line treatment.

The Mayo algorithm puts iron therapy and elimination of trigger meds as first line treatment and then gabapentin or pregabalin as medication to treat RLS that hasn't responded to raising iron levels.

In the meantime, until your iron levels are raised, you could ask your GP for a short course of codeine to take at night. If you're up twice a night, most nights that would put you in the moderate to severe RLS category. There is a chart to monitor your RLS severity on the RLS UK website.

rls-uk.org/diagnosis#:~:tex...

[Bramblespaniel in reply to Joolsg]

wow, thank you so much for all that info, I will have a good read!

I have had iron tests before but didn’t get full results, just to say I was a little deficient, which led to taking supplements.

I have also seen a Kinesiologist who advised a while ago that my iron levels were sufficient to stop taking supplements, however that was a while ago.

I will read up and request another iron test as described and ask for the full results.

Thanks again!

[SueJohnson]

Joolsg is spot on as usual. Definitely read the Mayor Clinic Algorithm. To add to what she has said - doctors will tell you your iron is fine or normal, but what is normal for others is not normal for those of us with RLS. Improving your ferritin to 100 or more helps 60% of those with RLS and for some even eliminates their symptoms. When you take your test, and it is important to ask for the full panel iron test, take it in the morning after fasting overnight. If your take any iron, stop 48 hours before the test. When you get your results, if your ferritin is less than 100 or your transferrin saturation percentage is not between 20% and 45, post back here for advice on raising the levels. You are probably going to find that you do need medicine and be sure that your doctor does not prescribe ropinirole (requip) nor pramipexole (Mirapex) as they are dopamine agonists which you do not want. If you take any medicines or supplements if you list them here I can tell you whether they make RLS worse and if so can perhaps provide a safe substitute.

[Bramblespaniel in reply to SueJohnson]

Good morning SueJohnson & Joolsg ,

In response to my existing medication, I take HRT in the form of oestrogel pump pack, Testogel & Utrogestan tablets.

I am waiting for my GP to call me and hopefully will book in an iron blood test as you described.

I have also read the mayo clinic RLS updated algorithm with interest.

Thanks again

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.

[Bramblespaniel]

wow, thank you so much for the information SueJohnson & Joolsg this is all really helpful & lots to think about and try out.

I try and not to have too much caffeine but so love my sugar & salt so will try and reduce these. I also try to drink plenty of water and feel this can help.

I have also tried a topical Magnesium spray on my legs but had a nasty skin scrawling sensation which didn’t help my sleep either.

I will request the full panel iron test as soon as I can get a gp appointment.

Thanks again!

[Joolsg in reply to Bramblespaniel]

Caffeine is only a trigger for some people. I am one who finds caffeinated coffee actually helps when I have an RLS attack. Keep a food and drink diary. Usually you'll get RLS around 2 hours after ingesting any triggers.

[Bramblespaniel in reply to Joolsg]

Caffeine is definitely a weird one in that case, glad it works for you! Will start a food diary tomorrow on my Fitbit.

[SueJohnson]

You don't need to be afraid of the side effects of taking medicine for your RLS if you need it. Gabapentin and Pregabalin are the first line treatment for RLS and if you have any side effects that you can't take, you can always come off them. Nothing ventured, nothing gained. Dopamine agonists on the other hand you don't want since up to 70% of people on them will eventually suffer from augmentation which believe me you don't want.

[Bramblespaniel in reply to SueJohnson]

thank you Sue, that is reassuring. It will be such a relief if I can get my RLS under control.

[TeddiJ]

All great advice. Also try taking 2 iron pills an hour before bed. Those of us with RLS need more every day and some people swear by this alone. Especially since you have never been on the DA drugs that have really hurt the rest of us.

Other people on here say that taking the supplement GABA before bed works for them. Both of these are inexpensive and easy to try.

Also research dipyridamole-an old drug that has been found to work for many rls patients. All the drugs have side effects but some say this one is at the tamer end of the spectrum. Plus, doctors don't mind prescribing it.

I myself am trying to avoid opioids and drugs by using kratom powder and hirsuta. They stop the rls within minutes but may not be a great long term solution. I would definitely have some on hand for those bad nights though!

You can put all of these in the searchbar here and see what the forum says, of course.

Best of luck and congrats for not caving to the bad DA drugs!

[Bramblespaniel in reply to TeddiJ]

thank you TeddiJ , that is really helpful & I will certainly research your suggestions.

I have been drinking tonic water at least once a night when up with RLS but the effectiveness of this has waned.

Sorry to hear of the suffering of all those having used the DA drugs, sounds awful.

It is so nice of everyone to respond and help out, and especially nice to know I’m not on my own out there!

[Munroist]

all advice above is great. The ones I contine to find most useful are moderate exercise, eating fewer carbs and sugars, eat early evening, iron supplements (iron bisglycinate), good sleep hygiene (cool dark room, consistent bedtime, no blue lights), and if it does wake you and you need to move then don’t fight it. The sooner you get up and move for a few minutes the sooner you can go back to sleep.

[Bramblespaniel in reply to Munroist]

thank you Munroist that is very helpful, I will research dietary solutions suggested in the posts as well as the supplements.

I will try all I can before resorting to any medications and have plenty of great suggestions to give a go!

[BeachGolfer]

Though I am on Oxycodone I find that vaping Delta 8 THC Indica strain (not Sativa strain) helps with breakthrough restlessness. It is legal in most states in the US. If I use in middle of the night I can usually get right back to sleep. Or I use in evening if something I ate for dinner inadvertently causes restlessness.

[charlie1234567890 in reply to BeachGolfer]

BeachGolfer, do you worry about vaping? I'm 68 and want to try vaping Delta 8, but worry about my lungs. Tried ingesting cannabis but it didnt help.

[TeddiJ in reply to charlie1234567890]

Charlie-you might want to try the Delta 8 gummies. I, too, am afraid of vaping and also tried thc; it didn't help the rls. But the delta 8 gummies do seem to help me sleep through more of the night. Perhaps you should try vaping and the gummies on different nights? At least it is easy to get in the pot shops and vape shops!

[charlie1234567890 in reply to TeddiJ]

I've tried the gummies, don't seem to work for me that's why I'm considering vaping.

[TeddiJ in reply to charlie1234567890]

I tried the THC gummies, too, but the 50 mg Delta 8 gummies seem different. They are very strong. They don't really cut the rls but my legs do get a tingle from it and I seem to sleep more when using it.

But, yes, many people say smoking or vaping gives instant relief! I should try it, too.

[BeachGolfer in reply to charlie1234567890]

Yes, I do worry about vaping but since I’m not vaping off and on all day I’m hoping 🤞it’s not extensive enough to cause another health issue. It’s hard for me to focus too much on a potential long range problem when it offers almost immediate relief from the torture of RLS. I buy from IndaCloud which uses organic hemp and uses independent labs for testing the quality of the product.

[Almada]

I have to use a cooling fan in hot months, from april to October in portugal, all night refreshing my legs (with gabapentin of course, 3x day, 400mg, exercise, etc). It works. Even during day time, right this moment, and it is very relieving.

[Bramblespaniel]

Hi there, I have now had my iron test results. My GP wouldn’t do a full panel iron test and the only comparable reading is my serum ferritin which is 52.2.

My GP has recommended taking 200mg iron supplements 3 x per day.

Can anyone recommend iron supplements that work well? The ones I am taking are only 5mg per tablet.

Many thanks

Helen

[Bramblespaniel in reply to Bramblespaniel]

I also have another iron blood test in 3 months to check levels…

[Catslover-1 in reply to Bramblespaniel]

Ho there , was just reading your posts! I’m at the same point as you , my ferritin was 56 and I had to say to the doctor what I should take , he doesn’t know much about all this , just reads me a list of drugs I could try!

I was going to take ferrous sulphate 200mg three times daily but speaking to Sue Johnson she advised me to take two together once daily better in the evening with some orange juice as three tablets aren’t doing much so that’s what I am doing , my leg jumped and kicked out from 11pm until 2am this morning ;( sooner this iron is improved the better , also I asked the doctor for Gabapentin and some diazepam so that should be ready tomorrow to collect , was going to wait before starting it to see how I go with the iron but that may take a wee while , see how things go this week , hope you feel better soon .

Pam

[Bramblespaniel in reply to Catslover-1]

Hi Pam, lovely to hear from you and to know we (& many others) are going through this together makes me feel I’m not alone ☺️

that is good advice thank you, I’ll do that also with the double evening dose. I now have 200mg ferrous sulfate on prescription but do not have any other medication so far. Still clinging onto the hope that I can manage my RLS without prescription meds, although am at the end of my tether now so if iron doesn’t work then I’m signing up!!

Have spent a small fortune on magnesium & other supplements trying to manage with wavering success. I find that if something does help then it only lasts for a couple of months before the RLS finds a way back 🙃

Good luck to us with the iron & I wish you well on your journey!

Helen

[Catslover-1 in reply to Bramblespaniel]

Hi again , I didn’t realise how many people suffer from this until I joined here!

Yes me also! So many side effects with these drugs but if need be then we have to take them , would be far worse to our health if we didn’t , exhaustion and making errors at work is a total no go for me , I work with drugs!

Just had a message to say that Magnesium Citrate is best , Holland and Barrett!

Good luck also

Take care

Pam

[Bramblespaniel in reply to Catslover-1]

thanks Pam, Inhave used Magnesium Citrate by Solgar, purchased at H&B but will also try their own brand as I find changing brands helps as effectiveness wears off with one make/type. I have also had success with magnesium from Cytoplan and Lily & Loaf International, prescribed by my Kiniesiologist.

Good luck!

Helen

[Catslover-1]

Hi Helen , that’s the one I have bought and also Vitamin D , will give everything a good go , thanks for your message , and good luck too!

Pam