Restless Legs Syndrome

[Boxer215]

I have muscular dystrophy & recently suffering with restless legs syndrome at night which is affecting my sleep patterns. I haven't been to the GP yet because I don’t want a drug with side effects. Any ideas out there please ?

[Jules1953]

Boxer 215, I have recently (2 months ago) commenced taking Temgesic sublingual 200mcg tablet.

This is a low dosage Buprenorphine medication, which comes in microgram dosages. I take one sometimes two tablets under my tongue when I go to bed. If you are taking any other medications for RLS you need to slowly wean off these medications and at the same time introduce the Temgesic sublingual 200mcg tablets

Kind regards Julie from Western Australia

[Boxer215 in reply to Jules1953]

Thank you very much.

[Hidden]

Hello Boxer, I see you have just joined the site, so welcome and I hope you find it helpful.

I note you haven't seen a GP yet, so presume that you haven't been "officially" diagnosed with RLS. In which case the first thing you could do is just to confirm with yourself that you do have RLS as symptoms of other conditions can often be confused with RLS.

This is easy enough you can click on the link below and compare your symptoms to the RLS diagnostic criteria. If your symptoms fit ALL the criteria, this would confirm it.

Here's the link

irlssg.org/diagnostic-criteria

It would be a good idea to see a GP. If you do have RLS.

FIRSTLY, the purpose of this would be to arrange some blood tests.

Primarily you doctor could carry out tests for serum iron, transferrin, ferritin and haemoglobin. Please note that you would need to know the results of these tests. If your GP just says they're normal this is NOT sufficient.

In addition, though not as necessary, magnesium, vitamin B12 and vitamin D

Iron deficiency is a major causative factor in RLS and it may be that iron therapy may be sufficient to treat your symptoms.

Please see this link for more information about iron therapy for RLS.

sciencedirect.com/science/a...

If you have deficiencies in magnesium, vitamin B12 or vitamin D, taking supplemnts may help.

SECONDLY if you are taking any other medications for anything else, especially if you have started any new ones recently, you can discuss with your GP whether these may be making your RLS worse. It might be worthwhile you mentioning here what you are taking, if anything.

THIRDLY if you have only just recently developed RLS and have never had it before then it's possible that your RLS is secondary RLS, i.e. due to some other underlying condition. Primary RLS usually occurs when people are much younger. Your GP might want to check then whether you have diabetes, thyroid dysfunction or kidney problems. If your haemoglobin is low, (see above) this could be the cause.

You are quite right to avoid taking medicines for RLS. I hope the above gives you some ideas about how RLS may possibly be treated without medications.

If your GP does suggest any medication I do suggest that you come back here to find out more about what's been suggested as GPs are not always well informed abnout what's best for RLS.

You may find thus link informative.

cks.nice.org.uk/topics/rest...

[Boxer215 in reply to Hidden]

Thank you very much

[Boxer215 in reply to Hidden]

Hi again & thank you for your help. I have muscular dystrophy & I’m sure, having researched it I have RLS. I’m currently living in France & I’m putting off the GP because there is a tendency to over prescribe. I’ve had it before but this is worse. I will ride it out a little longer but will let you know what he prescribes—I just don’t want to be stuck on another medicine. Thank you again.

[Hidden in reply to Boxer215]

I can appreciate your reluctance to be given a prescription you don't need. However, that's really not the issue.

Perhaps you have misunderstood. As I wrote - it's important to see a doctor to have the blood tests, NOT for getting a prescription.

If you have RLS due to iron deficiency, then you may benefit from an oral iron supplement. You don't need a prescription for that.

As I also wrote, it's worth being checked out for other deficiencies, which if you have them, supplementation will help - no prescription needed.

Similarly with other medications and underlying conditions.

It is possible you can deal with your RLS without needing any prescription or drugs. However, you can't do the blood tests yourself, you need a doctor.

If the doctor wants to prescribe anything, you don't HAVE to take it.

I don't see the point of putting it off, the sooner you find out what's contributing to your RLS the sooner you can deal with it.

I also understand that you may have researched RLS and believe you have it. However, the best test for this is still the official diagnostic criteria. If you compare your symptoms to the criteria and they fit ALL then you probably have RLS. If your symptoms don't match any ONE of them, then you probably don't have RLS. In which case, your symptoms may be due to something else.

Certainly, if your symptoms only started recently then you don't have primary RLS.

[Boxer215 in reply to Hidden]

Thank you again. In France one has a blood test every year & the last one was fine except for a slight deficiency in Vit D. But I take your point & sure the GP will do another. I have been told by a specialist some time ago that the RLS is linked to my MD & muscle atrophy but he wanted me to have a lumber puncture so I left it, plus he wanted me to take a drug every day for the RLS when to me it comes & goes (but getting worse). I will see how it goes but really appreciate your advice.

[Madlegs1 in reply to Boxer215]

The fact that you appear to have intermittent rls would seem to indicate a trigger. Something is setting it off.

This may be a low iron at times but more likely to be a sensitivity to some food or drink.

If you start a food diary, it may show up links or coincidences.

Whenever I have MSG ,I get the most awful fizzy legs. The same with alcohol, artificial sweeteners ,rising agents and many red coloured processed meats ( difficult to escape in France 😜)

Some medications also set of the fizzies- particularly some antihistamines and antidepressants.

I hope you can get this sorted out. I imagine it will just be a question of identifying the cause.

[Boxer215 in reply to Madlegs1]

Thank you very much, very helpful. Certainly wine will give me a bad night

[LotteM in reply to Boxer215]

Can you get hold if the actual testresults? Not only the last, but prior ones as well? I don't think Manerva or any of the other responders have mentioned the importance of high iron values for people with RLS, as RLS is thought to be related to brain iron deficiency. This cannot be measured directly, but Hb, ferritin and transferrin saturation percentage are used as indicators. Especially ferritin should be at least over 75ng/l, but higher is better, as long as you don't get to values associated with haemochromatosis, iron overload. But if your iron system is otherwise functioning normally, it is not easy to acquire such overload. Raising iron is a slow process, but some people with deficiencies respond quickly to iron (preferably iron bisglycinate) taken before bed (i.e. on an empty stomach) once every other day.

[Boxer215 in reply to LotteM]

I will look at my last blood test, thank you for your advice & help

[Hidden in reply to Boxer215]

Doctors often say that blood tests are "fine" or "normal" or "OK".

However, when it comes to RLS this is not sufficient.

A key value is ferritin. If your ferritin is below 75ug/L you may benefit from iron therapy. It is better to be at least 100ug/L and preferrably above 200ug/L

"Normal" (or "fine") could be as low as 15ug/L, but that's only OK for somebody who does NOT have RLS.

However, if your symptoms are NOT RLS then this may be irrelevant.

RLS cannot be diagnosed by a lumbar puncture, it can only be diagnosed by symptoms - according to the diagnostic criteria. There are NO tests for RLS.

My suspicion is that you may have some symptoms of nervous origin related to your muscular dystrophy which are not RLS e.g. akathisia. Calling them RLS may be misleading. It's not unusual for GPs to have little understanding of RLS.

It just depends on which particular drugs the doctor was advising as to whether they'd be helpful or not.

[Boxer215 in reply to Hidden]

Thank you very much, very useful & helpful advice

[Hidden]

My wife has developed RLS after suffering a stroke. We are also reluctant to use drugs because of the horrendous side effects. Two quick fixes which help relieve my wife's symptoms are gentle leg massages and drinking tonic water for the quinine.

[Hidden in reply to Hidden]

By all means continue with the tonic water if your wife feels it helps. It is a common myth that it's effective for RLS which is based on the fact that quinine used to be mistakenly prescribed for RLS.

Mistakenly, because RLS was pethaps confused with cramp. Quinine isn't actually effective for RLS.

In addition, to get a sufficient dose of quinine from tonic water you'd need to drink about 20 liters.

It's possible that a stroke could trigger the development of RLS, but if your wife didn't have RLS before, then it might actually be something that mimics RLS.

Another possibility is that your wife may have an iron deficiency. This can cause "secondary" RLS. In which case I hope she has recently had blood tests for ferritin and haemoglobin.

Your wife might also benefit from magesium gel, rubbed into the kegs. This can help calm them.

[Hidden in reply to Hidden]

Thank you Manerva. I suspected the tonic water was more of a placebo but she says it helps so I'm happy to go along with that. I'll try your suggestion about the magnesium gel. She says her legs sometimes 'lock up' and get painful. Is this an RLS symptom as far as you know?

[Hidden]

Hi Boxer, do you ever feel constipated during your RS episodes? Alot don't talk about it much but if you are lying down and constipated at the same time, it can cause the same feelings of RS. Just saying...

[Boxer215 in reply to Hidden]

Hi, thank you for asking, but no. I get/notice the RLS when I’m trying to get to sleep. I don’t notice it during the day but 02.00 can be horrible.