sleep

[BobTay]

under the GP at moment for possible RLS. Had bloods and have a follow up appt on Monday. I joined a FB group and posted my symptoms but 2 people had advised me that it’s not RLS as I can sleep at night. Anybody got any thoughts or advice for me please?

[ChrisColumbus]

Welcome to the forum!

I don't know which country you are in Bob as you haven't completed your profile: this forum is UK/Europe based but we have members from all over the world.

As to whether you have RLS, you might like to read some of the sections on Understanding RLS on the RLS UK website:

rls-uk.org/what-is-rls

Iron levels are key to most sufferers' experience of RLS. Hopefully you've had a full panel iron blood test: unlike some blood tests this should have been done in the morning after fasting overnight - preferably for 12 hours - and after not taking any iron supplements for 48 hours.

The key measures in the results are serum ferritin and transferrin saturation (TSAT) numbers. There is a very wide 'normal' range for ferritin, but RLS cases tend to suffer if the figure is under 100 and preferably nearer 200. Come back here when you've got the results. If your iron levels are low, the first step is iron supplementation as the majority of sufferers benefit from boosting ferritin.

Unfortunately too few GPs know much if anything about RLS: you may be lucky enough to have an informed one but on the balance of probabilities this is unlikely.

There are many prescription and over the counter medications which can trigger RLS or make it worse: do post back with a list of anything that you're taking.

Whatever you do, do not let the GP put you on a dopamine agonist - pramipexole, ropinirole or rotigitine: these are not the best current treatments for RLS. They would probably help for while but in most cases eventually make things worse (see Augmentation on the RLS UK website).

[BobTay in reply to ChrisColumbus]

Thank you for your response - off my bloods the only thing I can see is serum ferritin 47 ug/L - I can’t see transferrin saturation (TSAT), I know the doctor was initially checking my B12 but that’s good. The only medication I am on is omeprozole for a hernia, take a daily vitamin D supplement and a loratadine anti-histamine

[ChrisColumbus in reply to BobTay]

The GP may say that ferritin is normal at 47 based on this typical set of NHS guidelines (this varies a bit from authority to authority):

Low: Less than 15 ug/L

Borderline: 16 – 40 ug/L

Normal: 41 – 400 ug/L

High: Greater than 400

However, 47 is low for an RLS sufferer and should be addressed with iron supplementation.

Whether you have RLS or not depends on your symptoms. Check the Symptoms & Diagnosis section on the RLS UK website and note the IRLSSG diagnostic criteria given there. Direct link added:

rls-uk.org/symptoms-diagnosis

[ChrisColumbus in reply to BobTay]

Whether you actually have RLS or not depends on your symptoms as per my previous reply.

On the subject of the meds you are taking:

While sedating antihistamines can exacerbate RLS, loratadine is NON sedating and should be OK.

Omeprazole can make RLS worse, but some have no problems with it. Depending on the severity of what you're taking the omeprazole for, you might find that another OTC product such as Gaviscon or BiSoDol is safer for RLS. However, even if you do have to take omeprazole and you do have RLS it won't necessarily make it worse - see this chain for example:

healthunlocked.com/rlsuk/po...

[Elisse3 in reply to ChrisColumbus]

I take omeprazole one every morning and i am one that it doesn’t make my RLS worse i tried stopping it and still my RLS was the same. Maybe i am just lucky to be able to take . 😊

[SueJohnson]

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.

The above is the only way RLS is diagnosed. If you don't meet all of the criteria you don't have RLS.

[Joolsg]

If you have no trouble sleeping at night that is a strong pointer that it's not RLS. However, it might be PLMD, where your legs move all night while you are stay asleep. It stops you sleeping deeply though and you wake up tired.Only a sleep study or a partner filming your sleep would be able to confirm PLMD.

What are the symptoms that make you think it's RLS? If the urge to move is not there, and the symptoms aren't relieved by movement, it's highly unlikely to be RLS.

But, tell us what you're experiencing.

[BobTay in reply to Joolsg]

I have itchy crawling burning shins, that feel heavy and painful and on a bad evening (most evenings now) I can’t sit still, they drive me up the wall, I have to get up and move around then as soon as I sit down they start jerking around again if that makes sense - been out shopping, just got in and been sat down for half an hour and my legs are tingling/crawling already 😢

[Joolsg in reply to BobTay]

That does sound like RLS.Your GP will say bloods are normal. But for RLS, serum iron has to be above 60 and serum ferritin above 100, preferably 200. Easiest and quickest way to achieve this is via iron infusions. Most doctors still believe iron infusions will kill us or cause anaphylaxis, but newer formulations are safer and any side effects can be quickly resolved in hospital. However, as with all meds there is a small risk.

Has RLS suddenly developed? What has changed? Have you started new medication like anti depressants, anti histamines, statins, beta blockers, PPI mefs. Have you recently had an operation or a viral infection?

[BobTay in reply to Joolsg]

This has been gradually building over the past 6 years or so, it used to be just a bit of itching but has progressed. The only thing that has changed is that I now have omeprozole for a hernia, take loratadine antihistamine daily and a vitamin D supplement.

[Joolsg in reply to BobTay]

Omeprazole is a PPI gastric med that blocks absorption of iron and magnesium & therefore triggers worsening RLS.You could see if there are other alternatives.

In the meantime, you could try taking 60mg ferrous bisglycinate last thing at night to see if it helps. Usually I would say to wait until you get blood results, but try it.

A number of people on here find it's all that's necessary to resolve RLS.

Loratedine is a non sedating anti histamine and is usually RLS safe.

[WideBody in reply to BobTay]

How much vitamin D3 are you taking? Have you retested your Vitamin D levels? It hasn't been mentioned but did you do your blood draw in the morning and fasted?

I also note that your are taking an antihistamine daily? This is not my area of expertise but I think antihistamines are bad for RLS. I don't know anything about loratadine.

[SueJohnson in reply to WideBody]

Loratadine is claritin and it is fine for RLS.

[SueJohnson]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. An iron infusion is best as Joolsg said but if you can't get one, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that 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 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 tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets 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.

Since you are able to sleep at night I would ask for a sleep study as Joolsg suggested. By the way PLMD is treated the same way as RLS.

The first line medicine for RLS is gabapentin or pregabalin. If you do decide to ask for one of these, post back here and we can tell you the best way to take it and what not to take with it,

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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[Elisse3]

Hi Bob i might have been one of those thinking it wasn’t RLS i know we have a few on fb group that have symptoms that don’t sound like RLS. whether you are who i commented on i usually direct people to look at the Criteria for RLS as having the urge to move is the important part to being diagnosed as having RLS. I apologise if you where not that person i commented to. 😊

[BobTay in reply to Elisse3]

I’m not the person you commented to, but thanks for responding. I’m back at the GP on Monday armed with lots of information and will update after my appointment.

[Elisse3 in reply to BobTay]

You came to the best place to get the best advice and support. 😊

[nick-the-turk]

Sleep how differently doctors approach this you see doctors on TV cant stress enough how important 8 hours sleep is but in reality they don't treat it that serious ive suffered with RLS and sleep deprivation for around twenty Years now whilst holding down a full time job and the help they've given be is minimal to say the least ok the meds im on I would say stop me climbing the walls but as for sleep I'd say 3 hours of broken sleep per night ill explain the 3 hours if I may its an hours sleep awake walking around then sit down drop off again then awake and so on even my wife as attended appointments with me to help in describing my nightly regime but still lack of interest at the minute they've signed me off from work because I'm physically and mentally exhausted but return tomorrow didn't help by the way. And I totally agree with the person that mentioned how good the people on here are ive never hid the fact that there is incredible individuals on this site and extremely knowledgeable to which I THANK YOU all

[Elisse3 in reply to nick-the-turk]

Hi Nick so sorry you are suffering are you still taking the Codeine phosphate? If i remember you were getting relief from it but that was a long time ago and that med can lose its effectiveness. x

[nick-the-turk in reply to Elisse3]

yes still taking them and pregabalin

[Elisse3 in reply to nick-the-turk]

Then probably the codeine phosphate isn’t helping anymore you need to talk your doctor to change to something else another opiate a bit stronger

[nick-the-turk in reply to Elisse3]

I will thank you