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Restless Legs Syndrome

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Advise

Gingeb profile image
13 Replies

Hi I'm new to this group I've been suffering from restless legs for about 8 months now does anyone have any advise how to settle it please I keep nagging at my doctor they said my iron is low so on iron tablets and I still get it they want give me gabapentine because I'm asthmatic any advice I would be greatful please the only thing that stops it is my morphine I am taking for bad back but I have run out of morphine so I'm scared I want get any sleep and be doing laps around my flat

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Gingeb profile image
Gingeb
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13 Replies
RoadRunner44 profile image
RoadRunner44

I don't really have any real advice for you unfortunately. I am in a similar position as you. I have had pins and needles, peripheral neuropathy, restless legs? Who knows what have. I have to wait 3 months to see if my symptoms are due to side effects of long term antibiotic. There are very knowledgeable people on this forum that suffer greatly but research treatments as well as try them. I'm sure they will be replying to you soon and hopefully give you some advice. Chrys

Hi.

Welcome to the forum. Although it's a dubious privilege.

There are many very knowledgeable people here who I have no doubt will shortly be in touch with you. They have certainly helped me.

Best wishes.

Bear

Kaarina profile image
KaarinaAdministrator

Hi Gingeb

Welcome to our community. You say you have suffered with RLS symptoms for 8 months. What changed around 8 months ago for you? Did you start taking any OTC remedies or different meds? Your doctor said your iron is low. What was the result of your ferritin level? If it was very low it may well take quite a time to increase.

Gingeb profile image
Gingeb in reply toKaarina

It's started ever since I started taking morphine but now if I don't take it my legs are worse and my iron wasnt really low

Knittingasweater profile image
Knittingasweater in reply toGingeb

It sounds like your going in to with drawl from the morphine , when you take the morphine it releases dopamine in ur brain , when u stop your levels are going too low causing these symptoms ,low dopamine levels cause restless legs

Madlegs1 profile image
Madlegs1

All that Kaarina has said.

If you gave up the morphine at that time, then I expect tou are experiencing withdrawals fom that.

You may need iron infusions, but only 50% of rls sufferers get benefit from that.

Gabapentin is a good med for many with rls, but won't get rid of withdrawal symptoms. Don't take magnesium at the same time. 2 hrs apart.

Hopefully that gives you some help.

Cheers.

Hi sorry to hear of the sticky situation you're in.

Just to elaborate really on what Kaarina and Madlegs have said.

Low iron is associated with RLS, but it's Brain Iron Deficiency which is the problem not necessarily iron deficiency anaemia, therefore the best blood test for this is "ferritin".

There is evidence that 50% of RLS sufferers benefit from raising ferritin to at least 100mcg/L.

That's not at all easy to do. If you try doing it by taking oral iron, the effect is limited because if you take prescription strength iron, it can cause gastrointestinal problems. Furthermore, there is a physiological mechanism which limits how much iron you can absorb.

One way round this is to take "gentle" iron and take it every 2 days, NOT every day. This tricks the limiting mechanism. Additionally, absorption is better if you take the iron on an empty stomach and drink a glass of orange juice.

You can also get round the problems by having an intravenous iron infusion. That isn't so easy to do, the problem is getting a doctor to do it!

If your RLS started, apparently suddenly, 8 months ago, it's possible something triggered it. There is a long list of medicines which can trigger RLS. Including -

SSRI and tricyclic antidepressants

Antacids such as proton pump inhibitors (the "prazoles"), H2 inhibitors (Zantac).

Anti nausea agents, (Metoclopramide, Domperidone).

Beta blockers.

It may be that you started on an antihistamine for your asthma.

Unfortunately, warnings have been issued about prescribing gabapentin to anyone using opiates or suffering pre existing respiratory problems and it can lead to respiratory distress. So I can understand the reluctance to prescribe it.

A low dose opiate can be effective for RLS, but there is reluctance to prescribe one for RLS, more so with asthma.

If raising ferritin doesn't work and no trigger is identified, then there is an option which normally I would never suggest.

This is to take a dopamine agonist (DA) for RLS. As a last resort!!!

DAs can be very effective, but if used, have to be used with great caution due to longer term consequences which you would need to be aware of.

I hope this helps

Tamaroy profile image
Tamaroy

As you are an asthmatic I do not feel that I can advise you on your medication needs for your legs.

I have had RLS for 41 yrs now, some medications help for a time some give me more hassle and awful nights.

Maybe Manerva can help you on the site, a very knowledgeable person, who has helped me.

Regards

Eryl profile image
Eryl

I've found that by cutting out all sources of sugar it's eliminated my rls and it's helped my breathing. Sugar causes the body to produce more insulin which makes the cells of your body work harder, this causes inflammation. Inflammation in the nerves causes them to be more sensitive resulting in rls (or for other people they might notice migraines, fibromyalgia neuropathy etc). The chronic inflammation will also make you more likely to have asthmatic attacks.

robert1957 profile image
robert1957

Please research magnesium deficiency and symptoms of magnesium deficiency also research vitamins d3 k2mk7 look at drinking celery juice first thing in the morning good luck

I have tried most of the suggestions in previous replies to you. Many have helped and some did not so you just have to try each suggestion and see if it helps you; we all have different reasons for RLS and so different treatments are in order. The most recent thing I have tried is increasing my potassium - eating a banana every day is a simple and effective way to treat low potassium. Good luck to you and don’t put off experimenting with these various suggestions. I hope you are seeing a neurologist for guidance.

CookiePooki profile image
CookiePooki

Hello Gingeb, I take 5 mg of tramadol every night and it has completely stopped this symptom. The other night I must have forgotten to take it (duh?) and at 4 am the next morning I finally got up and took one. That night it was so bad even my arms were going crazy. I won't forget anymore.

Graham3196 profile image
Graham3196

What is your actual concentration of ferritin? Ask your doctors office for a copy of the the pathology report so you can decide if its high enough. It has been found that some people need their ferritin level to be 350 in order to force enough iron through their blood brain barrier.

If your ferritin level is as low as 50 most doctors will say its adequate because they haven't the time to study RLS latest research. This information comes from John's Hopkins hospital in the USA so its pretty respectable research. Remember your GPs desk is flooded with papers on new drugs every day. There is no one about to send them a note telling them to offer you an iron infusion which might save you buying drugs for the rest of your life. ( Heaven forbid that you might cease your contribution to my Big Pharma Share dividends. )

Tablets or other oral iron supplements will take forever to raise your ferritin level and probably never achieve the high level you might need. If your RLS is really annoying then you need an iron infusion to get it up there where it might help.

An iron infusion doesn't help everyone and various source suggest 50% to 80% are improved. I thought that if there was a quite small chance of 100% relief then it was worth finding the money for an iron infusion. It didn't help me but I don't regret investing the money to find out because it helps or cures many others.

Just make sure your GP doesn't know of any medical reason why you should not have an iron infusion because too much iron can damage or destroy bits you really need like a liver or kidneys.

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