re help

[mjm1929]

my restless legs are now not only in my legs I have symptoms in both stem and shoulders

Does anyone else suffer in these other places please help

Driving me insane

Mjm1929

[Madlegs1]

I suspect you are on medication for RLS - such as Pramipexol.

If so - check out " Augmentation"

On this page or elsewhere on this site.

Good luck to you!😎

[mjm1929 in reply to Madlegs1]

No the Gp gives me Quinine only but no help

Thank you would appreciate more help

Mjm1929

[SueJohnson in reply to mjm1929]

Stop the quinine. It is no longer used for RLS and can be dangerous.

Are you still taking morphine?

Yes RLS can be in other places besides the legs and can be painful.

I don't know what else you are taking so will give you my standard advice:

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), Neupro patch (Rotigotine) 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. Beginning dose - see below. 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 calcium-rich foods 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 up-to-date on it at Https://mayoclinicproceedings.org/a...

What are you taking for your heart problems as many of them can make RLS worse but there are some that don't so if you tell me I can tell you whether it does or does or does not and if it does I can give you the names of those that don't.

You may know this: Gabapentin and pregabalin doses should be kept low and patients carefully monitored for adverse effects, such as mental confusion and falls Doses should be adjusted for renal dysfunction. In patients older than 65 years, initial daily dose should be reduced (gabapentin, 100 mg; pregabalin, 50 mg) since they are eliminated primarily by renal excretion, adjust the dose in adult patients with reduced renal function.

Patients with kidney problems should take care with magnesium supplements. "Magnesium supplements can cause excessive accumulation of magnesium in the blood.

High calcium levels in the blood common in kidney patients may make RLS worse

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[mjm1929 in reply to SueJohnson]

Hi thank you am on iron medicine and folic acid medicine have been taking Quinine for over 10 years now

Thank you

Blood

[Joolsg in reply to mjm1929]

You need an IV iron infusion. No wonder you have RLS!Ask your GP to refer you to haematology. St George's in Tooting, the Royal Cornwall in Truro and Salford hospital are all familiar with iron infusions for severe RLS.

I can't believe you have been taking quinine for 10 years! It's a complete fallacy that it helps RLS and that's been known for longer than 10 years.

Reduce it slowly to avoid any possible withdrawals.

I'll bet your RLS will resolve after an iron infusion.

If you can't get one on the NHS, do try to find the money for private referral. It costs £800 & the Iron Clinic does them in Harley Street London, Manchester & a pop up clinic in Leeds.

Iron infusions dramatically improve 60% of cases.

In the meantime take iron pills every OTHER day as that raises serum iron and serum ferritin more quickly.

Your serum iron is 6 and needs to be 60. Your serum ferritin is 31 and needs to be 100, preferably 200. RLS patients need higher levels.

There's a printable page on RLS-UK website under 'useful resources'.

[SueJohnson in reply to mjm1929]

Joolsg is correct. 31 is very low for those of us with RLS. . Do try to get an iron infusion. To give you more specific information in the meanwhile: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise 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. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way 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 magnesium rich foods), calcium (or calcium rich foods) 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. 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 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.

[mjm1929 in reply to SueJohnson]

thank you this is iron

Mjm

Results

[Joolsg]

Can you tell us ALL current meds and the results of your full iron panel blood tests?Mind you, if your GP prescribed quinine, he/she clearly knows less than zero about RLS.

First thing GP must do is take full panel iron blood tests and review & replace all trigger meds.

Look at RLS-UK website and start reading up on RLS. Doctors aren't taught the basics and end up harming, rather than helping in many cases.

[mjm1929 in reply to Joolsg]

Thank you all bloods abnormal b12 iron folate ferritin all below have deficiencies in al and PA haemoglobin level low for over a year now

Thank you

[Joolsg in reply to mjm1929]

And has the GP arranged iron and B12 therapy? If serum ferritin is between 75 and 100 you should be given an IV iron infusion.And are you on any meds apart from quinine? You should stop quinine - it does NOT help RLS.

As SueJohnson advises, first get iron sorted & replace ALL trigger meds (anti depressants, sedating anti histamines, sedating and cold remedies, diuretics, statins, beta blockers, PPIs).

Then, if RLS is still symptomatic, start pregabalin or gabapentin.

RLS-UK website has dosing & timing info.

Do NOT let the GP or neurologist prescribe Ropinirole, Pramipexole or Neupro patch. They all worsen RLS and have a very high rate of Impulse Control Disorder ( gambling, overeating, impulse spending, hypersexuality). There are now hundreds of successful legal cases against GPs and neurologists for failing to warn of the high risk of losing your home, career, relationships to ICD.

[mjm1929 in reply to Joolsg]

Omg I did not know most of this at all it’s just getting to much now in arms and shoulders what’s best thing I can do myself please

Mjm

[Joolsg in reply to mjm1929]

Get an iron infusion. I've replied above.There's a printable page on RLS-UK website headed 'useful resources'.

Your GP needs to learn the basics.

An i v iron infusion of ferric carboxymaltose will dramatically improve your RLS.

In the meantime take 2 x 65mg ferrous bisglycinate pills every other night with Vit C.

And reduce quinine now- slowly. It can cause heart issues and has NEVER been a recommended med for RLS.

Maybe you should get a new GP?

[TheDoDahMan]

The best thing you could do is to find a doctor who knows RLS treatment and is willing to prescribe buprenorphine.

[Turkeylife]

hello,

Your not alone I have severe RLS in my legs and arms I’m on a waiting list to see a neurologist and yes it’s ruining my life

[Mozartsinger]

yes, I suffer in all those places you mention. I had no idea this terrible affliction existed. Everyone seems to need a different way of getting through by trial & error.

[GrandmaKarey]

My RLS can be in my hips and sometimes shoulders. It’s insufferable, I know.

[Kakally]

Dear mkm1929, The iron infusion is absolutely necessary for your RLS but you definitely need to see a haematologist soon to investigate why you have all these factors in your blood test that are out of the normal range. It is most important ….

Very best wishes that you feel better soon 🤗

[Delilah162]

Hiya, I feel for you. Rls/plmd affects my legs, arms, head and torso. Sometimes my face grimaces too. It's truly awful. I'm settled now on Oxycodone been a few weeks. I see you've had some great advice here about getting your iron up. Mine ferritin was 15 it's now 78 after 12 months of iron. My neurologist is debating an iron infusion for me. A dr tried to prescribe quinine for me but i said i dont have cramp, icant stop moving my legs. I really hope you get the help you need.

[mjm1929]

thank you to everyone of you who have given me so much advice and help with this I have a lot of health issues at this time and asked my Gp to refer me to haematologist and talk to him about iron transfusion but told me they would not give me one I told him due to having a problem absorbing anything it has to be given via injection the results shown are with me being on iron and folic acid medication for a year now taken daily so the iron folate ferritin B12 are the results with me taking the medication for a year now

And they tried the same 2 years ago and it did not work

Thank you mjm

[DicCarlson]

Iron (Ferritin) is painfully low, and I see it's not flagged as a problem. I had severe RLS (not on any drugs) with a Ferritin level of 49. It was in my arms and of course legs - very little sleep for months. Iron supplements (ferrous bisglycinate clelate, also called gentle iron) totally erased the severe RLS in 3 months.

[marsha2306]

I have RLS in my hands and arms too

[Lola43]

Hi, This is such an awful disease . The others are 100% right- infact they should be the RLS specialists, being able to prescibe for us! ( i wish). But anyway, the best thing you can do is get yourself a private appointment with a Neurologist in London (one of the ones that Joolsg has mentioned. You dont need the heamatologist for this. Its the Neurologist. I know money is tight with most of us, but spending that money for a private consultation, you will have thinsg sorted quickly . They will take the bloods and put your foward for iron infusion. Then I bet the majority of your symptoms will clear. Your Iron level is dangerously low. The fact the GP has ignorned this is negligent. I am suprised you are not white as a sheet , no energy to type and fainting with that sort of level. Have they tried to find out why? As the underlying reason as to why MUST be addressed. I dont want to worry you, but you may have absorbtion issues or blood loss somewhere. I hope you can get a neuro appt quickly. And while you are waiting for that (look at top doctors .co uk) for the a good neurologist, go back to the GP and state that you would like to know why your iron levels are so low and worried about blood loss.

I hope this helps, its nightmare for you. For a short term fix, pop to the pharamcy and get some solpadone max strength- its co-codamol , which is a very weak opioid, it may help with the RLS for now until you can get the iron infusion.

[mjm1929 in reply to Lola43]

Thank you for your reply and I am fainting a lot have been for the last nearly 2 years no energy at all sleeping round the clock bones hurt so bad having falls not able to concentrate and keep on track at all forgetting everything even after writing myself notes down to do next day my skin hair are now terrible I also forget to take my medication and important ones for my heart and hypothyroidism which Gp had left me on the starter does of 25mg for 5 years now ask him to refer me for iron transfusion because of my folate and ferritin so low but said it’s no good because they would not accept it and refuse referral told me that me requesting to see an haematologist would be again rejected or have to wait over a year it’s most of my bloods that are low alm iron haemoglobin low plus I have been diagnosed with iron folate ferritin vit D B D anaemia deficiencies on all my body just can’t work I have no appetite and totally fatigued like I never felt or had before I don’t go out at all and now with my other health problems it’s to much now I have serious vascular disease that’s I been told is very serious and need to see surgeon right away referral sent and see it’s pending I when spasms start can’t walk for weeks because of pain swelling I just want to feel normal and have a life

Thank you so much

[mjm1929 in reply to Lola43]

sorry this is my bloods

Results

[er24056278]

Dear mim1929.

I have suffered from the above for many years ( I would guess 20 at least. I have it in one leg and somedtimes Ifee the symptoms internally within my body. useually when in bed.

Can you give me a bit more info, eg. what medication you are on, and how igt effects your RSL, and also how you are, if for some reason you miss your medication. Then I'll be able to compare and see if there are any difference especially in medication.

One last thing. Have you had a diagnosis

ER