new with possible RLS

a couple of month I stated having bubbly sensations in my legs, mostly lower, and sometimes feels like a patting sensation. That’s the best way I can describe it. It all happens mostly when I’m laying down but also sometimes sitting at work. Nothing while walking or standing. My pcp is sending me to a neurologist because she isn’t sure if it’s rls. She thinks it might be Paresthesia. Thoughts? What tests has anyone had done to confirm rls? I was on a high dose of mirtazapine for my stomach issues and had no problems and this started after stopping it. PCP thinks it’s a coincidence but Im not sure. Just had an iron panel done but don’t have the results yet.

[SueJohnson]

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

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.

This is the only way it is diagnosed. Do you meet these?

[Hidden in reply to SueJohnson]

Thank you for responding. The only thing not matching is I still have symptoms when I wake up. Not as bad as when I first lay down in the evening, more mild but still there . Everything else is correct.

[SueJohnson in reply to Hidden]

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 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), pramipexole (mirapex)or Neupro (rotigotine) unless there is some special reason s/he feels you need it. 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 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 nor antacids 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 uptodate on it at

Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

[Hidden in reply to SueJohnson]

Thank you for the information! I’m doing a lot of that already. Just had my iron panel drawn yesterday. Last ferritin in November was 28, iron 74, binding 313 and saturation was 23.6

[SueJohnson in reply to Hidden]

That is very low. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day 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 your transferrin saturation is below 20, you may need an iron infusion.

If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. 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.

[Hidden in reply to SueJohnson]

Great information thanks! I take the bisglycinate because of constipation as I’m a gastric bypass patient. I’m only taking 27mg of the chelated so I will increase it today and take vitamin C with it and take all of your other advice. I’m also stopping my HRT to see if that help because I realized all of this started around the time I started that

[Hidden in reply to SueJohnson]

New results from yesterday

Ferritin 43

Total 44

Binding 294

Saturation 15.. that went down from 23 . Wonder what causes that. Of course my pcp said it’s all normal

[SueJohnson in reply to Hidden]

what is the Total? Is that iron?

[Hidden in reply to SueJohnson]

Yes I guess.. labs just say iron level

[SueJohnson in reply to Hidden]

I agree it is strange that the ferritin went up while the saturation went down as well as the iron. If the saturation was down both times and then ferritin went up it might be from inflammation but in any case it indicates you need an iron infusion.

What city and country do you live in?

[Hidden in reply to SueJohnson]

I live in the suburbs south if Houston Texas USA. Different guidelines than most countries

[SueJohnson in reply to Hidden]

You are lucky! There is a quality Care Center there, one of only 12 in the country and they have RLS experts who are known throughout the world. And you do need an expert as most doctors don't know much about RLS. I would cancel the appointment with the neurologist. Although you can give me his/her name and I could see if I know anything about him/her. All 3 of the doctors I list below are neurologists.

Houston Methodist Neurological Institute - Quality Care Center. Dr. William G. Ondo is the director but there would be probably a 4 or 5 month wait for an appointment. There are 2 others there who are equally qualified and probably won't have as long a wait: Dr Andrew Billnitzer and Dr Olga Wahn.

I also suggest you join the Restless Legs Foundation at rls.org . A membership is $40 and they have lots of information on their site and a monthly magazine. Then if you want you could also join a RLS Support Group which although not near you may have meetings virtually.

Austin :Chris Sica 804-651-7423 or Lufkin Donnie 936-635-4416

There is also an RLS Support Contact in Brazonia County Lisa Marie Smoth 979-900-8033 who can answer questions you might have on RLS.

[Hidden in reply to SueJohnson]

Wow your so knowledgeable.. thank you

I have an appt with Dr Bingzhong Chen who is with Methodist in Houston but Clear Lake location

[SueJohnson in reply to Hidden]

I would cancel. He is not listed as having RLS as one of the 12 top things he treats.

[Hidden in reply to SueJohnson]

I will see if I can change the referral to one of the ones in the medical center that treat rls. Same hospital group so hopefully I can choose them

[violetta254 in reply to Hidden]

Mine happen when I wake up in the morning too so that is not a hard and fast rule. But they stop after I get up.

[marsha2306 in reply to Hidden]

I also have RLS in the morning. It sometimes wakes me up as I'm still in bed.

[Kakally in reply to SueJohnson]

Honestly Sue ! I think this series of pieces of advice is an absolute triumph and I want to show it to any and every neurologist and medical school etc. . It is fantastic and sooooo comprehensive and helpful!

[Madlegs1]

Hi!

What medications are you on? All of them, including any herbal supplements?

Many medications can set off RLS or sensitivities.

[Hidden in reply to Madlegs1]

2 thyroid medications. Been on for 25 yrs

Metoprolol, estrogen patches, progesterone, chelated iron, magnesium glycinate, multi vitamin, zinc b complex, glutathione

[Madlegs1 in reply to Hidden]

Progesterone is certainly an RLS factor.

[Hidden in reply to Madlegs1]

Honestly, it’s a suppository so I don’t use it much. I do the estrogen so I have to use progesterone. Mmmmm I haven’t used it in a week and nothing has changed. Wonder if I should stop both hormones completely for a month and see what happens. I don’t have an appointment with neurologist until April so that will give time to see if it helps. I tried testosterone cream and I know that made things worse so I stopped it a month ago.

[SueJohnson in reply to Hidden]

Lottie did a study and found estrogen alone made RLS worse but combined with progesterone it was fine.

[Hidden in reply to SueJohnson]

I guess one never knows unless we experiment on ourselves Lolol I’m going to stop all hrt for a month and see what happens. Definitely won’t hurt and I would much rather not be able to take it than add more medication etc

[Birdland in reply to Hidden]

Sounds like a good idea to stop all HRT for a month. Hormone replacement of all kinds are RLS triggers for me. I wish it wasn’t so, but I had to be realistic.

[Hidden in reply to Birdland]

I stopped it all a few days ago. Such a bummer because in other ways I felt better but.. not worth it if it’s causing all this with my legs and muscles. Will it take a few weeks to clear my system? That kind of sucks lol do you use anything for hormones now? Wondering if the over the counter creams don’t cause these problems since they are made differently

[Birdland in reply to Hidden]

I agree, totally sucks. I've had RLS most of my life but it was mild and occasional, UNTIL, I started HRT about 20 years ago. I didn't know about triggers then so I was in denial and kept taking HRT. Instead I began taking the dreaded dopamine agonist medication for RLS, that was prescribed a lot back then. Bad mistake! But that's another topic! I felt better in so many ways when I was on HRT so I truly am bummed that I can't take it. I imagine a month off HRT would be enough time for it to mostly get out of your system, but I can't say for sure. The most annoying thing about RLS for me, besides the symptoms themselves, is what those of us that react to triggers have to give up. Such as, HRT, anything that promotes serotonin (SSRIs, melatonin etc), caffeine, alcohol etc. Insult to injury in my opinion. In my case, I believe it doesn't matter if it's over the counter, or in a supplement, if it raises estrogen, etc, it will trigger my RLS. But, everyone reacts differently. Maybe you will find that HRT is not the culprit. We have to be our own detectives! Best of luck to you.

[SueJohnson in reply to Hidden]

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). Conditions associated with hypothyroidism can make RLS worse so want to bring it up.

[SueJohnson in reply to Hidden]

Metoprolol is a beta blocker and makes RLS worse for most.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res.... If taking an ACE inhibitor or an ARB your potassium level should be checked as they can raise potassium levels.

[Hidden in reply to SueJohnson]

Thanks for all the info. I don’t have high blood pressure, I have some palpitations but I’m seeing a new cardiologist. I’m also on a very tiney dose of the metoprolol. I actually just made an appointment with the hematologist as well Dr the iron issue. Don’t feel like my pcp does enough with that

[SueJohnson in reply to Hidden]

The propranolol helps palpitations so you might want to mention that to your new cardiologist.

[Joolsg]

khealth.com/learn/antidepre...

Restlessness is a withdrawal side effect from stopping mirtazapine. So it might settle in a few weeks.

[Hidden in reply to Joolsg]

I have been off of it for 3.5 months but it did start after stopping it. I guess I will have to wait and see what happens with that, stopping hrt and adding more iron with vit c. If things calm down it was one of those for sure lol

[collageartist52]

responding to you and also some of the comments already here. Yes, completely agree on metoprolol....it gave me completely intolerable RLS instantly. What you describe could also be fasciculations. Read about them. I get them when my potassium levels are too low. I just put a pinch of potassium citrate in water and they are gone in a few minutes. But you could also eat foods higher in potassium, or use a "no sodium salt". See if that makes any difference. And let me know

[Hidden in reply to collageartist52]

If it is the metoprolol causing the issue, is it harmful to stay on it? I guess is it harmful that my muscles are doing this? I’m asking because I have an appointment with a new cardiologist in 4 weeks. I she also been on 12.5 mgs for 2.5 ish years and this just started a couple of months ago the ago, so I’m not sure it’s related to it. I do believe it brings my heart rate down a little too much and might give me more palpitations sometime later.. but not sure hence why I’m seeing a new doctor because my current one isn’t answering my questions enough to make me feel comfortable. Not even sure what was causing me to originally have the palpitations. My guess is going into menopause, having a big surgery on my esophagus and stomach then getting Covid.. all in a 4 ish months time. My current dr even told me I can try not taking it to see how I do. So im not sure if I should just stay the course and stay on it until I see the new Dr or stop it and see what happens. I can always go bk on it

[collageartist52 in reply to Hidden]

well, i can't give you medical advice. But we do know that both covid and the vax's can cause all kinds of heart issues, including palpitations, which is what i have developed...but trust me, if the metoprolol was causing you the RLS symptoms that i had, you would not be taking it..it was literally driving me out of my mind. I took 2 doses and then phoned my dr and said no way!

But read about fasciculations and see if that seems like what you are experiencing. But i can't tell you to take or not take a prescribed medication.

[Hidden in reply to collageartist52]

Thank you for responding. I will see how it goes and think about just trying to go off of it to see what happens. It’s not effecting life terribly but I certainly don’t like it! I will definitely research the fastulations today!

[YoghurtLover2]

welcome to the forum! You will find a lot of help here.

If it weren’t for the advice I’ve been given here my life with RLS would have been hell!

I’m weaning off Pramipexole with the advice here very successfully… still have about a 2 weeks to go and I’ll be totally off DA. I’m taking 300 mg Gabapentin and magnesium supplements as well as magnesium spray on legs before going to bed and sleep so well 🙏🙏

My doctor … she is very well meaning and very compassionate… said if Gabapentin doesn’t work she can prescribe another DA. I just said nothing … as I will NEVER touch a DA for RLS again in my life!

Good luck for your journey … you will find help and relief here!