RLS, my story so far. Please feel free to advise me.

[Red_Kelt]

Hello all.

Sorry for starting a new topic; I just wanted a clearer thread to read as I have difficulty following reams of print in other threads (I have scotopic sensitivity or so I’m told).

I first started getting restless legs years ago with symptoms increasing from about 4 years ago. RLS would keep me awake for 2 or 3 hours. I would be constantly stretching out my lower leg due to the discomfort.

I went to see my GP and I was prescribed 0.088mg of pramipexole. I ended up taking 6x 0.088mg. I guess I was augmenting. Anyway, I’ve gone from having sleep affecting discomfort to agonising RLS in my legs which is now also present in my arms and to a lesser extent in my torso.

My GP agreed I had augmented, and I cut down the pramipexole by 0.088mg per week. On my last week I was prescribed pregabalin 50mg and over two or three weeks this was increased to 200mg.

My GP was initially reluctant to switch my medications as he thought I suffered with addiction and was under a substance misuse organisation (SMO). He must have misheard me at some point as I work for a SMO, as a nurse. With this in mind I can only imagine the grief actual substance misusers with RLS must go through.

I’m also prescribed co codamol 30/500mg x2 four times daily. This is for a separate ailment.

The combination of Pregabalin 200mg and Co codamol 30/500mg x2 at night did not hold me and I sought another GP appointment to ask for an increase to 300mg pregabalin and switch the co codamol to codeine (so that I could increase the codeine without the paracetamol element). I was told I could not have another appointment for 28 days. I’m currently in the middle of this period and thought this was a good time to get some feedback from this forum.

On the nights before a work day I take one 0.088mg pramipexole tablet, alongside the Pregabalin and Co codamol. I have to, or else I do not sleep much at all, maybe two broken hours. I do not want to take the pramipexole but I have to wait until January 6th before my next consultation.

I’ve had a blood test, the GP stated my levels of iron were normal. Nonetheless in the last few days I’ve been taking multi vitamins with iron (Wellman Sport).

Recently I’ve had nights when I’ve been stood up all night, just stumbling around my kitchen with my eyes closed. So, any advice would be greatly appreciated.

As a nurse I work with doctors and one of the doctors says he has a contact who knows more about RLS. I don’t like imposing on people I work with and I never go sick but I feel things are about to change. My boss has been good by allowing me to turn up late for work without reprimand or loss of pay.

Lastly, I don’t think the term restless legs does us sufferers any favours. Even within the nursing community it’s seen as a minor inconvenience, a ‘just get on with it’ type of attitude.

[SueJohnson]

First off do not increase the pregabalin to 300 mg. It's not going to do you any good until you are off pramipexole for several weeks and your symptoms have settled and the 200 mg you are taking now may well be all you need.

Second ask what your ferritin is. Doctors will tell you it is normal but what is normal for others is not normal for those of us with RLS.

Third the multivitamin with iron won't help much if you need it. If your ferritin is below 100 or even if below 200 then 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 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. 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 to slowly raise your ferritin. Ask for a new blood test after 3 months.

If your ferritin is below 50 or your transferitin saturation (TSAT) is below 20% then double the amount of iron I gave above.

Fourth I gave you advice on getting off pramipexole in the other post but will be glad to repeat it here so you have it all in one place if you want. Also what helps and hurts.

Fifth Do see Dr Jose Thomas as he is excellent

[Red_Kelt in reply to SueJohnson]

Thank you Sue. I'm on the case already re seeing a specialist.

[CarnivoreTony]

I totally agree about the name. Agonizing spasm syndrome comes closer.

[Red_Kelt in reply to CarnivoreTony]

My doctor (a colleague) in work today completely agreed with 'restless legs' minimalizing the condition in other's minds too.

[Iloverls in reply to CarnivoreTony]

Totally agree! PLUS all of the scholarly articles refer to is a an irresistible urge to move your legs. That is like saying a migraine is an irresistible urge to go somewhere dark and quiet. It’s the nerve pain that characterises rls ( albeit we often describe that suffering differently). It is still a type of pain that we move our legs to alleviate.

[Lells]

Wow, you are really struggling aren't you. I feel for you, especially with the lack of sleep and I take my hat off to you for even going to work after the nights you're having. Please take the help from the person at work, they may have just the piece of advice that helps you and would be pleased to be able to do so. I'm going to write down what Sue Johnson has replied to you with regards multivitamins, iron, dosages etc as I didn't know that but it's a lot to take in! Good luck, I really hope your RLS improves in the new year!

[Red_Kelt in reply to Lells]

Thank you.

[SaltyUK]

Firstly I am sorry to read about your difficulties. For many years I continued to work despite severe lack of sleep so I know how difficult it is. I agree with Lells in that you should accept the offer of assistance from your work colleague and hopefully the Doctor with a greater knowledge of RLS may be able to help.

[Red_Kelt in reply to SaltyUK]

Thank you.

[Joolsg]

You have encountered the medical ignorance and negligence that is SO common worldwide.Withdrawal from dopamine agonists is hell. Experts make clear it's far more difficult than heroin/crack cocaine Withdrawal.

There is a 'useful resources' page on RLS-UK website. Show your doctor.

Iron therapy will be required. Your bloods may be normal for Joe public- but RLS patients need higher brain iron.

Serum ferritin above 200ųg is regarded as the level to aim for.

You need 2 /3 weeks OFF work when you drop the last dose of Pramipexole.

Withdrawal involves 4/5 nights of ZERO rest/sleep and severe all over violent spasms. Falls from exhaustion are common.

So do read RLS-UK website, useful Resources.

As SueJohnson advises, no point increasing pregabalin. You have to get through the brutal withdrawal before pregabalin starts to help.

Talk to your bosses. Tell them to read the RLS-UK website.

Good luck.

[Red_Kelt in reply to Joolsg]

I was chatting to my immediate manager today and told her to anticipate me having a prolonged absence. I imagine she can see that I'm at the end of my tether and others are encouraging me to go off work for the time being.

[EndlessRLS99]

Then call it by it's real name: Willis-Ekbom Disease.

[Theonlypetied]

Your journey is very similar to mine. My RLS and PLMD was a parting ‘gift’ when I left the NHS! Wishing you all the best as you negotiate this journey.

[Red_Kelt]

Thank you and same to you.

[pianoplayerPLMD]

I so agree with you Red Kelt and the others, the term Restless Legs does not convey the misery it causes. It makes people laugh, as if it's some kind of clownery. I don't like having to describe it to people unfamiliar with it.

[Nyana]

Hi there, I've really tried everything and nothing helped. Since 10 years I use Methadone 5 mg 2 times a day and I have my life back. Maybe you should try it. As of the first day I took it I only have a little bother from RLS like twice a month. Hope this info helps! Good luck!

[Red_Kelt]

I've seen a sleep specialist (last week) and he has recommended lifestyle changes first. I've also got a sleep study to do and the correct fasting blood test for ferritins etc.

Also, I finally gave up taking pramipexole, I'd been on this final dose of 0.088mg for a good while, after being on 6x 0.088mg at one point.

I completely gave up caffeine, and I've reduced my nicotine intake (I vape) - almost to zero now.

I've noticed a big difference in my RLS to the point it can be controlled by pregabs and codeine.

Don't get me wrong, I don't feel good at all with all this detoxing but I'm not climbing the walls at night.

The anticipated grief from stopping pramipexole hasn't really happened yet; not that I'm complaining.

If your new here and looking for some answers you can try ditching caffeine and nicotine. Also, chocolate, alcohol, and fizzy drinks. You might be surprised by the results.