Sleepless nights

[Eayoung]

Hi, I'm Elaine, I'm new to the site, I have been diagnosed rls by a neurologist they are saying it is due to low iron! But it's unbearable I also get it in my arms, I get it in the daytime but also at night which is horrendous, I work full time on my feet all day and I have a family to look after and it's so difficult! I currently take duloxetine, amitryptaline, naproxen but nothing helps any ideas

[Hidden]

Hi Elaine, low iron or in our case its our Ferritin level that can make a difference to RLS . You are taking 2 anti-depressants and both of those can make RLS much worse. so i think that is your problem. If you NEED to take a anti-depressant, then look at this website it should list which ones are more RLS friendly rls-uk.org

[Madlegs1 in reply to Hidden]

Also look at changing to a doctor who really knows something about rls-- anyone who has you on antidepressants is not treating you appropriately.

[Hidden in reply to Hidden]

I agree. Many antidepressants are dopamine antagonists which block the dopamine that provides relief. Also, my RLS is iron related. I am both anemic and have a vitamin d deficiency. Taking iron pills has helped IMMENSELY! Best wishes!

[BromazepamBrother in reply to Hidden]

A dopamine agonist, not antagonist would be best because it does not block dopamine like some antidepressants, it causes the brain to more readily accept the dopamine available in the brain causing more/better uptake of dopamine. Just wanted to inform you of that....

The class of drugs, called dopamine agonists, activates receptors in the brain that produce dopamine, a chemical that helps regulate movement and mood. Because RLS seems to be caused by a dopamine shortage in the brain, Requip and Mirapex—taken an hour or two before bed—improve nighttime symptoms in many patients.

These drugs are used widely for Parkinsons and aren't expensive here in Canada.

[Hidden in reply to BromazepamBrother]

That’s what I said lol...many antidepressants ARE antagonists. I think you misread. I was explaining WHY those particular pills hurt our legs. It’s happened to me so many times, it’s sheer torture. I’ve been on mirapex for 15 yrs and know exactly what it is and what it does.

[BromazepamBrother in reply to Hidden]

Yeah I didn't misread was trying to add to your comment, you spoke of antagonist antidepressants and I was talking about agonist drugs not antagonist ones. Trying to help others such as us as it's such a torturous condition that science can only manage by constantly medicating, no cure unless it's from opiate pain killer withdraw which takes 1-2-even 3 months. I feel for all suffering. I've done so much research I had to explain all this to my family Dr. They get paid per patient and by writing scripts, they need more education in my opinion. It's bad when I know more than a pharmacist or doctor. Sad really. Thanks for sharing your info, I tried to list meds to avoid but forgot the antidepressants. Thanks for the response.

[Hidden in reply to BromazepamBrother]

Oh I see!! That’s the problem with text! It can be so easy to misunderstand what the said person is saying. You are absolutely right! Ugh, I know what you mean about doctors. It seems these days, we are more of a burden. At least, that’s how many have made me feel! I applaud you for doing so much research and helping others on here! You are a good soul! I apologize again for the misunderstanding!

[Kaarina Administrator]

As Elisse has pointed out, both the anti-depressants you have been prescribed are listed as medications to avoid if suffering from RLS.

Wellbutrin (not available in the UK) and Trazodone do not generally worsen RLS. Mirtazapine (Remeron) will worsen RLS for a small minority but not everyone.

[Eayoung]

I don't take any of the medication for depression, the medication is for chronic back pain, 3 slipped discs and a trapped nerve which in turn I've had injections that has caused nerve damage, tbh I find that my gp's just don't know how to treat me and just keep throwing more medication at me then telling me I shouldn't be taking it as it is dangerous e.g. tramadol and fentanyl, I have weaned myself off both! I just can't seem to find anyone that can help, thanku all for yr advice so far!

[BromazepamBrother in reply to Eayoung]

I have already replied once but just want you to know that my RLS is due to coming off of opiate painkillers as well so I totally understand your situation. I had cancer twice at age 20 and then at age 22. After surgery I got addicted to morphine and then continued buying off the street. At age 22 almost 23 I decided to get on methadone maintenance so that my addiction would go away and I could live a normal life without being sick all the time from lack of painkillers. I've been on methadone for 16 years now which is about 5 to 6 times more potent then the morphine. It also is a slow-acting painkiller that lasts 8 hours but stays in your system for up to 3 days. I was taking 160 mg for the full 16 years and I stopped it completely on my own about 3 weeks ago. Methadone is also stronger than heroin so you can imagine the hell I went through to get off it. I also used to abuse fentanyl patches when I could get them and you have to be very strong-willed to stop these medications without detox or a medical doctor to monitor you. Long story short if your RLS is related to pain killer stoppage you are lacking dopamine and when the brain goes into sleep mode with the Natural Body circadian rhythm you're dopamine drops and that's what causes RLS at night. But it can also happen at any time of day. I would recommend you talk to your doctor about a dopamine Agonist. Just search for dopamine Agonist medications on the internet. I have the same issue as you I went to emergency numerous times after being plagued with insomnia 4 weeks and all they did was give me medications such as Valium and Gabapentin which drugged me up but did nothing for RLS. I am now getting through the worst of it but it takes a long time especially if you being on the painkillers a long time. Good luck finding what you need but iron I don't believe will help as I tried it and it didn't work for me due to my reason for having the RLS which was the same as your reason.

[Hidden]

So, you need to get off those anti-depressants and your doctor NEEDS to give you something else for your chronic back pain etc, Tramadol is not dangerous to take as long as you are taking the prescribed dosage. It works for RLS and hopefully your back pain. did you find it worked when you were taking them before..?

[involuntarydancer]

Were those meds prescribed for rls? If so they are inappropriate. Even if they are not for rls they may well be the reason your symptoms are so bad.

Raising iron levels may help your symptoms and is a reasonable approach. For some (lucky) people raising iron levels alone can render symptoms bearable so that no other medications are required.

If you are prescribed other medications for rls (particularly anything from the dopamine agonist family - mirapexin/pramioexole/siffrol, ropinerole, rotigatine/neupro), it would be worth doing some research before going too far down the road of taking the meds. They usually work well at first but have the unpleasant tendency to make symptoms much worse in due course and also make some of the alternative medicines less effective so that your options are more limited.

With rls, doctors tend to be woefully ill-informed and sufferers really need to become experts in the condition themselves to ensure optimal treatment.

[BromazepamBrother]

Yes I have RLS too. Mines due to opiate/narcotic painkiller withdrawal. In my case it's lack of dopamine in my brain causing it. For the last three weeks I have to stand or walk like every 2 minutes, takes hours to achieve sleep. I've heard that low iron can cause it as well but Mines fine. An easy simple fix if it is from low iron is just to buy iron supplements but it will not work if it's not your iron causing this. I tried Lyrica and Gabapentin but the didn't do much but relieve pain and get me buzzed/drowsy. Also there are dopamine agonist drugs but again their for dopamine not iron so I'd suggest spending money and trying iron. Also certain medications can cause it, or worsen it too, antiphsychotics/mood stabilizers like olanzapine or certain antihistamines or allergy medications and some things in cough/cold medicines. I wish you luck in finding peace, RLS is the worst. To me it's a feeling I get in legs and lower back as if I'm watching someone drag their fingernails across a chalk board. Creepy, crawly, uneasy feeling. If your not sure you have RLS you probably don't, if you have it you know! Best wishes.

[DicCarlson]

If your Ferritin level is low - less than 50 - start supplementing yourself. Iron of choice is Ferrous Bis Glycinate Chelate - manufactured by Ferrochel, and sold by many brand names including gentle iron, and as a transdermal patch by PatchMD. It's cheap only about $5US. albionferrochel.com/index.p...

[Lonely7]

Sorry I did not get a chance to read this earlier. I very much sympathize with you. The only medications I have been on are Mirapex & Sinimet (Levodopa /Caribidop) 100mg. Mirapex works real well at first but the side effects of drowsiness is difficult to deal with. In early stages I was able to cope with it fairly well. But the longer I was on it the worse the side effects became. The Sinimet is very good for quick relief but it only works for 90 minutes & then I would have to take more of it. That's ok under certain circumstances but not always practical. But it works quickly. Now my doctor is trying to wean me off (it is adicting) Mirapex & get me on Gabapentin. It is not easy. This is my fourth day into it. Last evening I think I pushed it a little too much. Had a very bad reaction. I thought I was going to die & at times was close to wishing I would. But I am doing not too bad today. That is about it for my treatments. I have tried numerous other things none of which worked for me. Hope this is helpful to some degree.

Lonely7

[Nora22]

So sorry about your rls suffering. Your current medications worsen rls. Trying a gentle iron supplement for a few months might help. Dopamine agonist drugs help at first, then make it worse. Read this webpage and watch the videos for more information.im

hopkinsmedicine.org/neurolo...

Epsom salt baths at bedtime help too, to get magnesium and lower stress. Stress based inflammation sometimes is the cause of rls. Here's a site that explains that:

Www.rlscure.org