new symptoms with RLS

[LadyElanor]

Hi I have had RLS on and off for the last 20 . It used to be once or twice a year that it would keep me awake but lately I seem to be getting it a lot more . A new symptom is the tips of my toes feel strange like they’re a bit numb and tingly . Does anyone else get this . Thanks in advance and I am new to this forum x

[ChrisColumbus]

Welcome to the forum: it would be helpful if you could complete your Profile to show which country you are in.

Firstly, are you sure that you have RLS: see the RLS-UK symptoms and diagnosis checker here:

rls-uk.org/symptoms-diagnosis

If you do have RLS, have you had your serum Ferritin checked, as improving this helps many. See the RLS-UK iron therapy document here:

rls-uk.org/_files/ugd/b0a19...

Beyond this, there are many possible treatments for RLS - and a lot of medications to avoid - see this page which starts with treatments and goes on to meds to avoid:

rls-uk.org/medical-treatments

I hope some of this is helpful, but do come back with any questions: there are many experienced people here who can help!

[LadyElanor in reply to ChrisColumbus]

Thank you so much I will certainly look through all of this info . I wanted to see the doctor today but I got lumbered with a nurse . She said she wanted to do blood test next week to check for thyroid diabetes anaemia znd something else but I don’t know if she is testing for what you lovely folk gave advised how can I tell if she is ?

[ChrisColumbus in reply to LadyElanor]

As per the iron therapy document I linked, as far as RLS goes the key measurement for iron is serum ferritin. Sue has also gone into this below , but essentially a full panel, morning, fasting blood test should be taken to measure serum ferritin, serum iron, total iron-binding capacity and percentage transferrin saturation.

Further to your recent reply to Sue, when you read through the RLS-UK Medications To Avoid that I linked to you'll see that most Proton Pump Inhibitors worsen RLS. including omeprazole and lansoprazole: depending on the severity of the symptoms that you experience Gaviscon Advance may do the trick while not triggering RLS. You'll also see that Tricyclic medications such as amitriptyline often make RLS worse.

By the way if you are diagnosed with RLS and raising your ferritin levels doesn't help (this should be the first step) many (most?) UK doctors will still prescribe a dopamine agonist (pramipexole, ropinirole or rotigotine) which will help for a while but eventually make things worse (a process called augmentation) and/or lead to impulse control disorders. NICE guidance, revised this year, does now warn about this but doesn't rule out use of these drugs, but in any case doctors have not necessarily read the guidance. Few UK doctors know much about RLS - they are not taught about it, and rely on outdated guidance. You should refuse a dopamine agonist: again, Sue goes into this below and also talks about what are now the first line treatments for RLS - gabapentin and pregabalin. (These are also medications which can be used to treat peripheral neuropathy which Jools mentions below).

[SueJohnson]

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

Since you don't mention that you are taking any medicine for your RLS, I am going to assume you aren't taking any. I am going to elaborate on what Chris has said.

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) 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 uptodate 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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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, C, 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. Keep a food diary to see if any food make your RLS worse.

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.

[LadyElanor in reply to SueJohnson]

Thank you so

Much I’ve made a reply on the first comment for all

[LadyElanor in reply to SueJohnson]

I have taken omeprazole for over 20 years recently changed to lansoprezole . Also have taken co codamol and amytriptilyn at night for back pain since the birth of my triplets 30 years ago but I stopped taking the co codamol three months ago . Thanks to you all I am going through all this info x

[SueJohnson in reply to LadyElanor]

Lansoprazole is a proton pump inhibitor and RLS-UK says most proton pump inhibitors worsen RLS. And in any case it interferes with iron absorption so should be taken many hours apart from any iron you are taking. Also if taken long term your magnesium should be checked. I would suggest gaviscon advance instead. Take it 30 minutes after eating, 4 hours before or 2 hours after taking iron Don't take antacids within 2 hours of taking gabapentin, antihistamines, some antibiotics, beta blockers or steroids.

Amitriptyline is a tricyclic antidepressant which makes RLS worse for most. Wellbutrin and trazodone are safe antidepressants. It is also used for neuropathic pain which is probably why you were taking it. Gabapentin or low dose opioids can help with that, Check with your doctor.

Triplets - wow. That must have both been a challenge and a joy.

[Joolsg]

I agree with ChrisColumbus and SueJohnson.The numbness in your toes sounds like peripheral neuropathy, which is linked to RLS. So ensure you meet the criteria for RLS so you get the correct treatment.

Numb toes can also be a sign of low thyroid, so when you get iron panel blood tests, you should ask for a thyroid check at the same time.

Raising iron levels can help RLS, so that should be your first step.

[LadyElanor in reply to Joolsg]

Thanks so

Much I have replied on the top comment

[Nikos64 in reply to Joolsg]

Thank you for your comment Joolsg. My recent TSH number was elevated which means my thyroxine levels are low. So I will mention it to my doctor in case the tingling/numbness is related to that or whether it exacerbates my RLS.

[Nikos64]

Yes!! I also am experiencing this symptom !

It started about 3y ago when I was 57. At first I thought it was either neuropathy related to a disc herniation. I also was pre-diabetic so I also thought it was diabetic peripheral neuropathy.

However, the tingling in my toes only occurs during the time my RLS symptoms are at their worst .. nighttime. Thus my conclusion is that this is a not so typical RLS symptom.

Btw, I take strong meds to control my RLS : gabapentin and oxycodone. While these medications are very effective at stopping the restlessness, they do nothing for the toe tingling. Fortunately, the toe tingling symptom is not that annoying and I can fall asleep despite it.

Hope you feel great otherwise!

[FuchsiaFlower]

I too have tingling / burning toes . It starts early evening . I dunk my feet into a bowl of cold water . A suggestion on this forum . It brings relief . I have a bowl next to my bed and always cool them before bedtime and during the night if necessary. Simple but effective.

[Embroiderer]

I would suggest you do see a doctor re the numbness and tingling in your toes- could be something else entirely.

[Kiram]

hi yes I get pain in my toes , sometimes I describe it as feeling like someone is try to pull my toe nail off , other times I get pain in ankles or knees , so for me RLS is not just urge to move but pain in various part

[RiversW]

Hi LadyElanor,

Along with the classic RLS symptoms, I also have tingling, numbness and heat, primarily in my feet and toes. I have had many test performed over the years to try and determine the cause but all led back to RLS. The heat can be severe and at times as debilitating as the classic RLS symptoms. Buprenorphine as eliminated the classic symptoms 98% of the time and significantly eased the less severe symptoms to the point where they don't keep me awake or disturb my sleep.

Good luck, Rivers

[Munroist]

If the numbness and tingling happen all the time then it feels like it may be nerve issues possibly sciatica type symptoms from disc problems in the lower spine. You mention back pain which may be linked.

If the symptoms occur only when you get other RLS symptoms including the urge to move etc then it is more likely to be related to RLS which often includes some painful or uncomfortable sensations as well as the need to move.

You will have seen in other posts that amitriptyline can often worsen or provoke RLS symptoms so finding another painkiller might also help. Pregabalin can help with RLS as well as reduce neuropathic pain so that might be an option if you still need a painkiller for your back pain.

[Lilcatfeet]

I too developed peripheral neuropathy which was extensively investigated by two top neurologists who both concluded that it was related to to RA given the timing. Now I wonder if it’s the RLS . Sadly, in my case, this led to Charcot feet, two failed surgeries and, instead of amputation, life in a wheelchair.All of which is to stress the importance of foot care with neuropathy: check feet daily for ulcers, never go barefoot, wear supportive footwear.