Can anything be done?? RLS - Restless Legs Syn...

Restless Legs Syndrome
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Can anything be done?? RLS

amycol83
amycol83

Hi. Ive suffered with restless legs now for about a year. Hit and miss if I sleep or not nornally but the last week had been hell. It is constant from the moment I sit down in the evening to the moment I get up.

I have been getting a couple of hours a night sleep but it is ruining me.

Its in my arms now too and I also have itchy skin ( no allergies, rashes or problems) sometimes I itch and a raised group of bumps form then they go away.

I went to the docs and they did blood tests. Iron was slightly lower than what it should be (17 when it should be 20?) And she said liver function is fine too.

I dont knpw what to do. It's driving me crazy. I dont sleep, I dread bed tume, mt husband thinks I dont love him because we sleep in seperate beds (I am awake giffling all night so its not fair)

Help, please. There must be something

15 Replies
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That is very low (if it is serum ferritin) for an rls sufferer. Most GPs don’t know this but we should aim to get our serum ferritin to over 100 (much higher than the ‘normal’ range for the general public) and rls experts now routinely treat with iv iron with a view to getting levels to over 300.

I would start an iron supplement in your shoes. Most people on here take iron bisglycinate (aka gentle iron). Some people take it every other day as there is a theory that it is absorbed more readily that way. Optimally it should be taken on an empty stomach (4 hours after last meal) and you should wait about 1 hour before eating again.

I would think that your current worsened symptoms might be because your iron is so low. Raising it might show an improvement and is definitely worth trying.

I made a recent post in which I set out a large number of self help and pharmaceutical options in detail. You could have a look through it and see if anything is of use for you. I will try to find the link or you could search on my name.

This is my previous post:

Raising iron levels helps many - though not all - rls sufferers. There are a number of non-pharmaceutical options you can try in addition to iron. Many people find magnesium - either as a supplement or a rub - helpful. Support tights can assist with symptoms (even for blokes). Very hot baths or cold showers/baths for the legs work for some. A very distracting activity such as a computer game (reading, tv or paper puzzles are not distracting enough) for about 20 minutes can lead to about 2 hours of symptom free sleep for me as can about 20 minutes of yoga type stretches - particularly for the legs and lower back.

Some people find a cup of caffeinated coffee has a positive impact when symptoms strike. I have used nicotine gum sometimes and found it helped. Making sure the bladder and bowels are empty is also helpful.

Then there are endless other remedies suggested from time to time: rooiboos tea, wheatgerm, apple cider vinegar, adrenal cocktail (one quarter teaspoon of seasalt and cream of tartar dissolved in diluted juice), essential oils, vitamin B12, Vitamin D, taurine, CoQ10, etc etc etc Most sufferers have spent a fortune trying various otc remedies.

It is worth trying codeine and even the small amounts in solpadeine can help. Opioids have been used to treat rls since the 16th century. Methadone is used by a lot of US experts. There are other medications - the dopamine agonists which are often very effective but can lead to terrible problems if not treated with extreme caution, anti-convulsants such as gabapentin and pregabalin though these don't work for everyone and can have intolerable side effects. Off label treatments such as dipyridamole, low dose naltrexone etc etc can help some.

Then there is the dark side: kratom which many find very effective but illegal in many jurisdictions and cannabis which works for some but again has problems with legality and finally cbd which some find helpful though not everyone and it is very expensive.

It is also important to make sure you are not taking substances that may be exacerbating your rls such as benedryl, some anti-histamines, some anti-depressants, melatonin (for some), amitryptiline etc etc.

Most medical professionals know very little about the condition and some manage to make things much worse for their patients so it is worth informing yourself widely before you accept the advice of your GP. I hope you find some help. It is a truly dreadful condition.

Thank you. I will try some of your suggestions. Does it also cause itchy skin?? As well as bones??

I have never found it caused itchy skin - just a feeling of crawling almost inside the flesh

Hidden
Hidden
in reply to amycol83

I do get itchy skin when I am feeling at my worst, but I suspect it is part of the body's response to tiredness rather than the RLS itself.

gypsy49
gypsy49
in reply to amycol83

If i start itching i know i'm in for a bad night usually a sign for me which is every night gggrrr

Personally, mine always starts with getting itches in various areas of my body, arms, legs mostly and then it (that wretched need to move) starts slowly but surely in my arms and I know I have to get up because restless legs are coming.

Sus

That is a blood IRON reading. You need the serum ferritin test, fasting.

If the rls came on suddenly, it is most likely a reaction to something. Cast your mind back to that time- did you take a antihistamine or on antidepressant?

Diet change?

Something set it off.

Have you had neuropathic tests?

Good luck.

amycol83
amycol83
in reply to Madlegs1

I have had rls on and off for a few yeara. I am on Sertraline which I have heard can cause rls. But it is ridiculous since pregnancy and since having her. It is every night and I am only getting 2 or 3 hrs a night sleep from exhaustion with a 7 month old too. Just at my wits end. Have got some tonic water today so fingers crossed

What was 17? Ferritin? If so, this is disastrous.

When did it start - did something change in your life?

Do you take any drugs for it? If so, what?

The fact that it is only one year, and already spread to your arms, points to some problem in the body not related to genetic inheritance.

Parminter
Parminter
in reply to Parminter

Okay, got it.

Pregnancy and childbirth is a common cause because of iron loss in the brain, you must raise your FERRITIN levels, not 'iron' levels. They should be 100 or higher.

You need to know the iron levels deep in the brain, where RLS/WED arises. Common-or-garden iron tests will only tell you about circulating iron, whereas a ferritin test is a good indicator of brain-iron.

Stop the Sertraline and find an anti-depressant that will not worsen the situation, such as Wellbutrin or Trazodone.

This sort of RLS very seldom stays once properly treated, which means iron iron iron.

So you will be fine.

As you may be very short on iron, it would be a good idea to keep an eye on your baby, who may also be too low in iron.

please research magnesium deficiency and symptoms of magnesium deficiency also research benefits of vitamin d3 k2 mk7 good luck

There's one thing you can try that won't cost you a thing except maybe new clothes ä your waistline decreases. That is to adopt a low carb diet. It's worked for me. I've had very few attacks of rls recently, and I know exactly what has caused each one. It was straying off the diet for a little treat, or being given food by someone who didn't realise how strict I needed to be.

As sugar is almost 100% carbohydrate, almost all sugary foods need to be cut out. The only sweetened food I have is a scraping of marmalade on my toast at breakfast. Also restrict foods with a high glycemic index (check diabetic diets for a list), especially close to bed time.

There is good theory as to why this works, but is would make this reply a lot longer.

I know a lot of the SSRI OR SNRI can exacerbate restless leg syndrome but sometimes you may need them and your doctor may have to work around them. If that makes sense. I would very much caution against the use of trazodone as an antidepressant as even at low doses can be very sedating, which is why here in the US it is primarily used as a sleeping pill rather than to treat depression. This is an older drug and to get to an effective dose may just turn you into a tired zombie all the time. I’m not a doctor but I am a RN plus I’ve been on this for a sleeping pill and just 25 mg puts me to sleep. Just my 2 cents worth here. I hope that’s of some help to someone 🤓.

Sus

My RLS hits my knees like giant hands twisting above the knee one way and below the other. In addition to meds I have been using a hybrid of Blue Emu Lotion. (glucosamine and chondroitin and msm added (plus a few other goodies). It seems to help!!! A natural product. That has lead me to try other 'natural' remedies, like essential oils to calm me, I am starting mindfulness (it is a lot like Centering Prayer ie. Contemplative Prayer without the religious aspect) so I expect that it will be of help. Music. Gotta have music thru the headset when I lay down. Whatever music turns your crank. I go between rock of my era ' Seals and Crofts, etc etc to old-time Christmas music etc. Don't give up. I have suffered for over 15 years and have to keep changing the regimen. Nothing works forever.

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