relief for RLS

[ruthgnatt]

what kinds of help have others found for restless leg syndrome?

[WideBody]

Welcome Ruthgnatt. Simply put, RLS is caused by a brain iron deficiency. This can be caused by a lot of things including genetic. However, the very first step is to get a morning fasted FULL iron panel. Since we are dealing with RLS, ferritin should be above 100 and Transferrin Saturation Percentage should be above 35% (TSP is important to check). It is possible to have totally normal ferritin and have low-abnormal TSP, it's called Iron deficiency Without Anemia

For a lot of people supplementing with 65mg of elemental iron with a little vitamin C on an empty stomach helps.

After that there are the alpha-ligands, like Gabapentin and Pregabalin.

Personally, Ibuprofen helps me, it doesn't kill RLS, it just deadens it for awhile.

Some people find relief with Magnesium, while I am not one of them.... I still take it, because...

I find yoga helps me cope. I have beat the crap out of my legs, trust me, that doesn't work.

I have crammed myself into the couch. I have slept on the floor, when I can't deal with my RLS making the bed bounce. (bring a blanket, you will wake up cold).

Warm bath or showers.

Finally, screw it, get up and do something productive that doesn't require thought. I have cleaned the kitchen, polished the pans, scrubbed the oven and done the laundry quietly all night. I may be exhausted, but I might as well accomplish something.

Good luck and I hope you find your relief.

(Manerva should be by shortly to give you even better advice!)

[Munroist in reply to WideBody]

I’m with you on the overnight housework. I never empty the dishwasher or tidy up properly after cooking otherwise I’d have nothing to do for the 30 minutes of movement I need to settle the RLS. If hoovering didn’t wake up the house I’d be doing that.

[WideBody in reply to Munroist]

I would vacuum if it were quiet. But hoovering?

[Munroist in reply to WideBody]

I use them interchangeably but should probably use the generic vacuuming term. Either way too noisy.

[WideBody in reply to Munroist]

In the US, hoovering has a negative connotation, I would go with vacuuming. Same around here. I have four kids and a wife in the house. Their conversations are hilarious especially when they discuss how they didn't sleep much last night. After getting out of bed at 10am in the morning.

[ruthgnatt in reply to WideBody]

thank you so much!

[Hidden]

Hello ruthgnatt

There's lots of help available in this forum, on all sorts of aspects of RLS, so I hope you find it useful.

What you may find helpful depends on how severe your RLS is and what kind of help you're looking for.

Unfortunately, it seems that most people with severe RLS end up taking some form of medication as other remedies are either insufficient or ineffective, or nobody tells you about them.

Your first help then may be to download the IRLSSG rating scale and complete it. This will give you a score for your RLS severity.

Just google "IRLSSG rating scale".

It is best to avoid starting to take any medications for RLS. None of those that are effective are ideal and can cause their own problems.

There are roughly two categories of remedies for RLS

1) Those that prevent symptoms

2) Those that relieve symptoms.

The very first thing that should be considered for somebody with RLS is blood tests for iron deficiency as WideBody has very kindly written about. In summary anybody with RLS with a ferritin level less than 75 can benefit from taking an oral iron supplement.

Anybody with RLS with a ferritin level more than 75, but less than 200 may need an IV iron infusion to gain any benefit from iron therapy.

Iron therapy can benefit up to 60% of sufferers, it is a preventive treatment.

Similarly, (but less so) taking supplements of vitamin B12 and vitamind D can help.

The second thing that should be considered for anybody with RLS is to identify if there are any "aggravating" factors. i.e. things that make your RLS worse. Avoiding these can help prevent symptoms.

One set of aggravating factors is medications. If you take any medications for any other condition then they may be making RLS worse. Quite a lot of these. Excuse me for not writing them all.

Another set is food. Diet can affect RLS in the short term (hours to days) and the long term (months to years).

Short term "triggers" for RLS are sugar (and anything with refined sugar in them), alcohol, and caffeine.

There are various food elements that can affect RLS but each individual person may be affected by different things. Some people control their RLS by diet, but this isn't particularly common and requires lifestyle changes.

Diets include low oxalate, low carbohydrate, gluten free, lactose free, anti-inflammatory and others. Changes in diet and lifestyle may not have immediate effect.

If you do decide to make dietary changes , consult your doctor first especially if you suffer any condition which may be affected by diet.

Inflammation is a another factor which affects RLS, making it worse. This could even be chronic inflammation which you may possibly not be aware of.

Food sensitivites can cause inflammation. Excess carbohydrate can also cause inflammation. If you have any bowel problems e.g. H Pylori, IBS or SIBO, these can aggravate RLS.

Some other food supplements may help with RLS, especially those with anti-inflammatory or anti-oxidant properties. E.g. celery juice (tablets) has a strong anti-oxidant in it.

Most people that suffer RLS have "primary" RLS which is congential. There may be a history of it in the fami;ly and it tends to occur earlier in life, sometimes in chidlhood. It tends to get worse with age. Pregnancy can precipitate it.

Some other medical conditions can make RLS worse or in some cases cause it. If you do have one of these conditions then that may be a factor in your RLS.

These include

Anaemia (iron deficiency or macrocytic)

Diabetes

Thyroid dysfunction

Kidney disease

Circulatory problems (ischaemic or venous insuffiency}

Peripheral neuropathy (sometimes mistaken for RLS).

Effective treatment of these (if possible) will treat RLS symptoms.

There are many things that peoplle suggest to relieve their symptoms once they have started or to prevent them for a short while. None of them tend to have any long lasting effects and some only offer relief whilst the remedy is actually being applied.

This includes anything from lotions and oils to mechanical or electronic devices.

I suggest you browse through other peoples' posts to see what they find helpful.

Beware of "natural" remedies, it's often assumed that because this label can be applied to them, then they're safe. This isn't necessarily true. Check with your doctor.

If all else fails then there are medicines that can help prevent symptoms occurring. They can do this quite quickly and quite effectively. This is a bit of a minefield as primary care doctors generally aren't too familiar with the latest recommendations about RLS medications.

If your RLS is severe and you feel you do need a medication, I suggest you come back to this site and find out more before consenting to taking anything.

Sorry if this is a lot to absorb, I didn't intend it to be so long.

I hope it helps.

e

[SueJohnson in reply to Hidden]

800 mg (200 2 hrs before taking 600) of gabapentin at night eliminated my restless legs

[WideBody in reply to Hidden]

ruthgnatt I told ya he'd be here.

[Goldy700]

People here have made very good suggestions - I am a big believer in an anti inflammatory diet - for one meal I have a large smoothie / I mix celery, carrot, coz lettuce, ginger, tumeric, green apple or whatever combination you like - with a dash of stevia for sweetness. This is highly anti- inflammatory, I avoid sugar, processed foods and do yoga and walking. I am 72 and have had RLS since my 30’s. I have avoided taking drugs as I am very wary of augmentation. I seem to keep it manageable - these past few years I have been taking medical cannabis which has been wonderful. It helps me sleep and dulls the surges which can also go through my back and arms as well. It is important to get an accredited source as otherwise you may not be getting an accurate dose. Some people find CBD alone works well - others finds as mix of CBD/ THC works best. The starting dose is usually 20- 30mg.

[bedith6 in reply to Goldy700]

Where do you get your medical cannabis from pleaseGOLDY7000. ?Are you in the U.K?

[Goldy700 in reply to bedith6]

I am in Australia and it is prescribed by my doctor. It isn't hard to get a script here. The cost is coming down as well. I hope you are able to get it prescribed in the UK. Well worth a try. Let me know if you have any other questions.