Newly diagnosed rls

[Smodge1]

Hi, I was diagnosed with rls about 6 weeks ago after finally going to gp. He ordered bloods and I have a ferritin level of 5. He is keen to find cause of low levels, so is referring me for more tests as he suspects an ibd. My main question is does anyone else wakeup with aching legs and arms? They feel like as if ive done a work out! Is this from rls? Thanks

[SueJohnson]

It's possible. You will find out if this is the case once you are treated for your RLS and your symptoms are under control. Or they may be caused by IBD. With your extremely low ferritin you should ask for an iron infusion. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.

For your RLS 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 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). 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. 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 of gabapentin and pregabalin 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) daily." If you take magnesium don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and don't take calcium within 2 hours. 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...

By the way, you should indicate on your profile whether you are male or female and where you live as this will help us in answers to your posts.

[Smodge1 in reply to SueJohnson]

Hi sue, thank you for your replies. I have updated profile now.I have been taking pramipexole for 6 weeks, only 1x 0.088mg tablet a day. Although it's not doing anything and gp was reluctant to increase dose so think I will just stop it.

I will be starting 210mg 3x a day of ferrous fumarate from next monday, I can't start before as I'm having further tests done that day.

My gp seems to think that my levels are low as I'm losing blood from somewhere, hence him suspecting an ibd.

Although my ferritin levels are low, I'm not anaemic. My bloods next week may say otherwise, as I feel worse than I did 6 weeks ago when I had my first lot.

[SueJohnson in reply to Smodge1]

When you take iron, the body responds by releasing hepcidin a peptide hormone which prevents you from absorbing any more iron for up to 24 hours so there is no point in taking it 3 times a day. Also ferrous fumarate has 65 mg of elemental iron in each tablet and and Johns Hopkins Medicine says your body won't absorb any more than 85 mg a day. However since your body isn't absorbing much it can't hurt. You really need an iron infusion to bypass your gut. So take your three tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. 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.

[Shumbah in reply to SueJohnson]

Hey lovely ,

I just wanted to say the knowledge you bring to people is priceless and life saving.The years of torture and research to get where we are some people simply forget others and go on their journey . I know the time it takes to share this knowledge Thank you for taking the baton and sharing your incredible RLS education to our new ones .

I’m working on a little something I have stumbled on I will share if it progresses well.

Sending you a big long hug 🤗

[SueJohnson]

Meanwhile 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, MSG, collagen supplements, 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, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Joolsg]

You really need to see a haematologist. An iv iron infusion would likely resolve all your symptoms.

[Smodge1 in reply to Joolsg]

I will be starting ferrous fumarate next Monday, I can't start before as I'm having more tests. My gp thinks that rls will improve when iron level do, but he wants to find out why they are so low.

[Joolsg in reply to Smodge1]

He probably won't find a reason. Low iron is extremely common in RLS patients and usually there is no reason. GPs think they'll find a stomach ulcer or IBS, but it seems we can't hold onto iron.Ask your GP to look at the Mayo algorithm. It will take over a year to get your iron and ferritin levels up beyond the required levels.

That's why an infusion would be more helpful.

Look at all the posts on here about iron and there is a FB group called the Iron Protocol with useful information about iron and infusions.

60% of RLS patients show dramatic improvement by raising levels.

[WideBody in reply to Joolsg]

The doctor may or may not find a reason for the low iron. It should be a priority to find the cause. Yes, ultimately there could be no cause.

I have low stomach acid, I don't absorb iron well.

[Moonwalker1967]

After a bad night, I also wake up with muscular pain. It's like having run the London marathon all night. It gets better during the day if I keep moving. Horrible feeling!

[Smodge1 in reply to Moonwalker1967]

I'm sorry you feel like that too, but good to know I'm not the only one.

[Shumbah]

My son suffers from exactly that symptom , he lives in the UK .

He feels like he done 5 rounds in a boxing ring when he wakes up, I know another man who was the same.

[Smodge1 in reply to Shumbah]

It's a horrible feeling, but it's good to know I'm not on my own and imagining it!

[Kakally]

Everything Sue and Joolsg said…..👍👏

Yes in particular, iron infusion now…. to maybe massively help your symptoms and relatively quickly. Or at least find out soon whether you are in the ~60% ‘iron responders’ group. If it turns out that you are not , then at least you can focus on the correct medication to start helping you.

NO dopamine agonists, at least not in these very early days of your management.

Yes, continue with the investigations just to check on possible cause of such low ferritin.

Yes. Mayo algorithm for gaining great information,knowledge and understanding of RLS. Very best wishes xx

[Smodge1 in reply to Kakally]

I don't think I can just get an iron infusion tho? My gp never mentioned it.

[Hidden in reply to Smodge1]

Please don’t even think about going for an infusion until you’ve tried the oral iron first. As has been recommended it’s best to take both doses about an hour before bed. I do this (only with ferrous bisglycinate) and it gets rid of the RLS in one hour for one night. Works for Sher as well: healthunlocked.com/rlsuk/po... Please note she is now taking both doses at night.

It’s odd that your RLS began 6 weeks ago. Are you taking SSRIs or HRT or Melatonin? These will make the symptoms of RLS worse or trigger in first place if you are predisposed to it in the first place. Those seem to be the worst offenders, however, Omeprazole, Benedryl, Calcium Channel Blockers, Zantac, among others, can trigger RLS as well. Anemia/very low iron can also be a trigger if, as I said before, you are predisposed to it.

See below link too, though Sher is more similar to you: healthunlocked.com/user/Gil...

[SueJohnson in reply to Smodge1]

Ask him about it, since your ferritin is so very very low. Don't wait for him to bring it up. And yes iron tablets will bring it up, but at a ferritin of 5 it will take forever.

[WideBody]

I have good news for you. Congratulations, you found what will certainly help with your RLS!

I was in a similar situation. I would highly recommend that you do not continue the pramipexole, but instead focus on your iron. Obviously an infusion should be considered.

I would like to add, is low iron and low Vitamin D have been correlated. There are many studies that show Vitamin D can help the symptoms of RLS. I believe the mechanisms behind it is that Vitamin D blocks Hepcidin which blocks iron absorption. Vitamin D helped me get my ferritin in the 100's fairly easily. So please consider checking your Vitamin D levels and if low supplement accordingly .

Also, low iron causes changes in the brains of RLS sufferers. Mainly a decrease in the amount of Adenosine in the brain. Dipyridamole is a drug that blocks the ENT1/ENT2 receptors in the brain and increases intercellular Adenosine. The results are amazing, I have been on it for about a year. This is the first drug for RLS that was developed by doctors studying the brain of RLS patients.

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

movementdisorders.onlinelib...

Since you definitely have low iron, you fit the bill for Dipyridamole.

an interesting video

youtube.com/watch?v=XuIRPVN...(Not working as expected?)

Good luck, please let us know how you make out.

[Hidden]

A member by the name of Marlayna is the perfect example of why you want to start with oral iron and preferrably bisglycinate:

Marlayna1 year ago “Please get your iron checked. I’m your age, and had symptoms for twenty years. Finally had iron checked and learned it was very, very low. Took a LOT of iron, built it ip to a very healthy number, and now I take 18 mg of chelated iron before bed on empty stomach. Has saved my life because I understand your desperation.”

And here is a much earlier post from Marlayna:

Marlayna672 years agoI took iron at night (around 8 pm when iron levels drop) with a probiotic for six months. I raised my ferritin from 7 to 240. Now the docs are asking me to stop taking iron so I did. Although I had complete relief from RLS for these six months, it started creeping back within one week. No pun intended. I may have to keep up my protocol and ignore the doc advice.