Restless body movements...

[WorryFreeMe]

I am used to successfully managing restless legs with pacing etc. but last night was suffering from hip and lower body movements, any ideas on how to combat these as pacing, etc. were ineffective and I was suffering for a few hours there...

[WorryFreeMe]

I should have mentioned that I have taken a natural approach so far and have been resisting the prescription of Endep on the fear of augmenting. So far I have managed albeit having to manage symptoms with being awoken several times and having to allow 10 hours sleep sessions to gain 7 hours of pure sleep. Am hoping there is some sort of exercise to counteract it before I have to give in and start taking the medicine.

[Madlegs1 in reply to WorryFreeMe]

Stretching, hot/ cold pads, weighted blankets, cool bedroom milky drink with turmeric and cinnamon and honey, cold shower, stretching, exercise bike for 10 mins, magnesium rub/ pills, did I mention stretching? A percussive vibrator.

And so on.

Everyone seems to have different tricks.

I'm up at 2 am and nothing is working- worse- I can't figure out what the trigger was, 😠

Hope you get some rest.

Get your iron levels checked- ferritin and %sat.

Keep a diary of meds and foods to see what might be setting you off.

Good luck.

[WorryFreeMe in reply to Madlegs1]

Thanks, Madlegs, Will take them on board.

[Nettles68 in reply to WorryFreeMe]

Hello, sorry to hear you are struggling with your RLS.

Did Madlegs1 mention stretching? Lol!? 😂

You mentioned Endep, I believe this is Amitriptyline. This would not be a good medication choice for RLS. In the majority of RLS sufferers Amitriptyline makes symptoms much worse!

Please take a look at the latest (July 2021) Mayo clinic paper 'The Management of Restless Legs Syndrome: An Updated Algorithm'.

Sorry I don't know how to do a link! It contains all the information you need on medication etc.

I find a good walk early each day helps a bit with symptoms. On the days I haven't had a walk I tend to suffer even more. It takes effort but I find it worth doing.

I hope you find a solution/medication that works for you.

[LotteM in reply to Nettles68]

Very good reply from Nettles! I second her.

[Nettles68 in reply to LotteM]

Thanks LotteM,

I'm always worried I might say the wrong thing or give the wrong advice! 😳

So thankyou for your encouragement.

By the way I'm a she 🌺🌼🌺😊

[LotteM in reply to Nettles68]

Edited ☺️

[joepublic]

I had this & it was called Periodic Limb Movement with my consultant prescribing Gabapentin to help.

[MumofSam in reply to joepublic]

PLMD is a separate condition from RLS, although many RLS sufferers on here suffer from both. I don’t.

[Elffindoe]

Good if you can avoid RLS drugs if you can, but there is a treatment that isn't pharmaceutical and also you could see, not what makes it better, but what might be making it worse.

If your doctor but knew, the first treatment that should be considered for RLS is iron therapy.

Iron deficiency is the main cause of RLS.

Have blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.

If you've any general iron deficiency or anaemia, then this needs treating, with iron.

If there's no sign of general iron deficiency and your TSAT is less than 45% then

a) if ferritin is less than 75 start an oral iron supplement

b) if it's between 76 and 100 then an IV infusion may help.

Up to 60% of people are successfully treated with an IV infusion, with no need for medication.

50% of people who raise their ferritin to at least 100 gain relief from symptoms.

The most popular iron supplement is ferrous bisglycinate (gentle iron). The aim of taking it is to raise ferritin without causing too many gut problems, hence -

Take it 1 hour before or 2 hours after eating or taking magnesium or an antacid.

Take it in the evening.

Take it with orange or vit C

Take it once every TWO days, not daily.

This is no quick fix. Oral supplementation can take 3 months plus to work, IV infusion 6 to 12 weeks.

If you have a vitamin B12/folate or vitamin D deficiency then supplements in these may help. Nowhere as significantly as iron.

Aggravating factors are things which make RLS worse.

The main factors are drugs. The main group of drugs which make RLS wotrse are antidepressants. Virtually all of them, including amitriptyline (endep).

Others include sedating antihistamines found in some cough medic ines, anti-allergy medicines and over the counter sleeping aids. Also proton pump and H2 inhibitor antacids, some anti-emetics, beta blockers, non K sparing diuretics plus others.

Alcohol, nicotine, sugar (yes sugar) and caffeine can make RLS worse. That is added sugar in drinks or sugar in cakes, biscuits (cookies) etc.

Inflammation is a mediating favtor in RLS. If you have no obvious inflammation then you may have chronic sub-clinical inflammation, particularly bowel inflammation.

Obviously if you have H pylori bacteria, IBS or SIBO, these need treating. Otherwise your diet may be a problem, you may, for example have a food sensitivity. Substances which cause oxidative stress can be a problem.

A low carbohydrate diet is generally recommended. Other diets could be FODMAP, low oxalate, gluten free, lactose free or anti-inflammatory. An anti-oxidant supplement e.g. selenium or celery juice can help.

Again no quick fix. Trying different diets could take months or years.

You will get suggestions for various supplements, vitamins, amino acids etc. Try if you like but according to the latest medical guidance for RLS, there is no evidence that any of these work.

If you want "natural" solutions i.e. things that aren't man made then there are a couple of suggestions. "Natural" things aren't necessarily better or safer than medicines.

You will probably get suggestions for CBD oil. This is actually just a broad label for a whole variety of products, most of which are a waste of (quite a lot) of money. For any chance of help a CBD oil has to be relatively high in THC. It is arguable how "natural" they are. This isn't legal everywhere. Medicinal cannabis (or cannabis) is best.

The other thing is Kratom, from a tree bark. This is an opioid like substance which can be effective. My personal opinion is if you're going to risk taking a non-standardised, non- regulated and unsupervised opioid like substance, then you may as well take a prescribed drug.

There are other non-drug measures you can try, depending on what your particular problems are. Anxiety and depression go along with RLS and can make it worse. There are acceptable cognitive or behavioural strategies for these if your RLS isn't being treated effectively. If sleep is a problem, then simple "sleep hygiene" measures may help, a little. CBT-i can help with sleep quality for RLS. There is evidence it works and it has been mentioned by a renowned RLS expert.

The above however do not relieve RLS symptoms, they only make them less "bothersome".

If RLS is effectively treated they aren't necessary.

Since iron therapy isn't guranteed to be successful znd "natural" solutions less so pethaps then for moderate to severe RLS it may be necessary to succumb to taking medication. The consequences of the chronic effects of RLS may be worse than the effects of the medication.

If you decide for medication then if you only get RLS occasionally, i.e. less than twice a week, then levodopa, a benzodiazepine or a low potency opioid (codeine or tramadol), taken on an "as necessary" basis may be sufficient. These are all a big problem if taken more often.

For daily RLS treatment the first ones recommended for RLS are either pregabalin or gabapentin, or in the US gabapentin enacarbil.

There is a small risk of augmentation with these. There is also a very small risk of respiratory problems in people who have pre-existing problems or who are using opioids.

If these fail then the next drugs in line are the dopamine agonists,,pramipexole, ropinirole or rotigotine. These all carry a high risk of augmentation.

You may hear of opioids being used for RLS, a low dose high potency opioid can be effective for RLS, butbusually other drugs are tried first.

All drugs have side effects but may give benefit that outweighs these.

It's quite important for people with RLS or any chronic condition to know about their condition and its treatment, how to best manage your medication and how to communicate effectively with doctors.

I suggest you read all you can on this site and otbers e.g. the RLS Foundation, the Southern California support group.

Also read this link.

mayoclinicproceedings.org/a...

I hope this of some help.

[MumofSam in reply to Elffindoe]

How do you get your GP to refer you for serum iron etc tests? In this time of Covid it’s impossible to see a doctor, let alone get referred for anything that’s not potentially life threatening. My blood ferritin levels, the last time I had a blood test, were over 100 so not low, although I know this doesn’t mean that my serum ferritin levels etc are what they need to be to prevent RLS. The only thing I was low on was Vitamin D and I now take a supplement, so that was okay in my last blood test but I don’t know what it would be without the supplements so still take those.

What could I say to my GP to get them to refer me for these tests? TIA.

[Joolsg in reply to MumofSam]

sciencedirect.com/science/a... could try sending this link. However, there has just been a notification that all non urgent blood tests have been suspended due to a nationwide shortage of test tubes. Typical!!!

However, raising iron doesn't work for everyone. I had an iv infusion of Injectafer and was devastated when it made no difference. Back to square one after tramadol, gabapentin, Oxycontin and pregabalin didn't help.

However, I'm now getting complete relief with 0.3mg Buprenorphine. Thanks to Shumbah and others on hete for reporting how it has really helped after other meds failed.

[MumofSam in reply to Joolsg]

Thanks for your reply. I wonder if primary RLS is different to secondary in that respect? Unfortunately the link didn’t work for me.

[Joolsg in reply to MumofSam]

sciencedirect.com/science/a...

Try this one. Also, you could try writing direct to the haematology department at your nearest teaching hospital and ask them to consider an iv infusion. That's how I got mine at St. George's in Tooting. It's not normally done under NHS funding protocols but they liked the evidence and thought it might be cost effective. Sadly didn't work.

[MumofSam in reply to Joolsg]

Thanks. That was interesting but I don’t have IDA so that article wouldn’t help with my case.

[Elffindoe in reply to MumofSam]

As far as I'm aware the only delays in getting blood tests done is a shortage of test tubes!

Test tubes!

It may be different in different areas of the country, I guess.

[MumofSam in reply to Elffindoe]

So a serum iron test, if I asked for it, would be done with no hassle, once test tubes are back in stock?

[Elffindoe in reply to MumofSam]

I've had no problem getting blood tests, it might vary from place to place.

[MumofSam in reply to Elffindoe]

Ah, right. I was thinking what you were suggesting involved more than a regular blood test. It’s easy enough to get a blood test, though I don’t know how they’d react if I told them what they should be testing for 🤣

[SueJohnson]

When I get restless legs at night I do the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl.... In addition, I walk for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walk. It works every time although I may wake up later at night and have to do again. Actually on the calf stretch I don't hold it for 20 seconds, but instead do the exercise for 20 - 30 times. I also push my heel back before I lean forward. I, also move my leg to each side when it is stretched. On the thigh stretch, I only hold it for a few seconds, but then repeat 6 - 10 times. Hope this helps.

[WorryFreeMe in reply to SueJohnson]

Thank you for your reply, Sue. Can you elaborate on rolling your feet...

[SueJohnson in reply to WorryFreeMe]

I move my foot to the inside and then to the outside as I step on it.

[WorryFreeMe in reply to SueJohnson]

Ah, thanks. I had visions of rolling a tennis ball or something similar and trying to walk at the same time. This makes more sense. 🙂

[MumofSam]

I now get RLS in my left arm, base of my spine and my neck, as well as my thighs. I find the only thing that helps with the legs and spine is to tense the muscles in my body, lifting myself slightly off the bed at the same time. The relief only lasts as long as the muscles are tensed of course. It’s way more difficult for my neck, but again it’s a case of stretching the muscles as much as possible, same with the arm. I’ll often thump the top of my thighs with the heel of my hand, as the pain interferes with the RLS sensation for a few moments. It’s awful, isn’t it.

[WideBody]

Well, I will give you the trick I used last night.

I went to the hard floor beside the bed, because I feel so bad for my wife. I take a pillow and have a blanket near by. It helps that the floor doesn't bounce or move like the bed.

I then start to do slow breathing and meditation, five counts in, hold, five counts out, hold. Focus and breath. I can usually calm myself. It's a lot of work, but I have gotten a LOT better at it.

I feel like it is my response to the RLS that can make it better. I absolutely know I can make my RLS worse at night.

Elffindoe above pretty much laid out all know available knowledge for RLS. It's a lot of reading, but well worth your time.

[MumofSam in reply to WideBody]

It has been shown that if you can distract yourself you can lessen or stop the symptoms. I definitely find the more I think about it, and anything that makes my brain overly aware of my legs, ie anything itching them or too clingy in bed, will most likely bring on an attack. So I can see how meditating, if it gets your brain away from thinking about the sensations, would work well. Unfortunately I think some doctors misinterpret this as meaning RLS must be all in the head to a large extent, when we all of course know it isn’t, any more than, say, itching from a rash, or indeed pain, is all in the head when distraction techniques work for both of them and are often used for chronic pain.

[WideBody in reply to MumofSam]

Spot on, from DadofaSam

[MumofSam in reply to WideBody]

🤣

[Elffindoe in reply to WideBody]

Excellent!

[Elffindoe]

IMPORTANT ERROR CORRECTION

For taking iron. This is only safe if TSAT is less than 45% NOT 75 as I originally wrote.

[LotteM in reply to Elffindoe]

Elffindoe, you can edit your original reply and correct the typo.

[WorryFreeMe]

Thank you for all the replies, you certainly have given me a lot to work on... much appreciated.