Wife of RLS sufferer.

[Virginic]

I’m the wife of an RLS sufferer. Just wondering if there are other RLS spouses or partners in the community. I do get depressed seeing my husband’s condition get worse and knowing there’s no cure.

[OFgc]

I'm a wife of a sufferer too. One that has never been diagnosed and never talks about his condition. We were sleeping separately for a few months because he kept waking me up (PLMS?) and not realizing "how come?"... and saying something is wrong with me for being so sensitive. Now we are trying two separate mattresses in one bed. Good luck to us... I see him getting worse too, he has restless arms too. It's really hard watching. I get terrified sometimes.

[Doings in reply to OFgc]

I feel for you, im amazed your husband is able to sleep through his RLS it is impressive as most of us are awake and roaming the house all night. Why dont you take a video of his nocturnal movements to show him. It took a while for my husband to understand mine but he’s seen how it affects my sleep and his of course, he is ok with me in a separate room. One problem is going on holiday, flights are a nightmare and sharing a hotel room i get no sleep and cant walk about, Ruins it for both of us, staying overnight at friends house is something which I truly cant bear doing any more. Hubby gets cross and understandably so, says im anti social and he’s right but it’s not of my choosing. Good luck.

[m1946 in reply to Doings]

Is your hubby on any treatment? Does he have any underlying health problems

[Doings in reply to m1946]

Its me that has RLS not my hubby. He sleeps like a baby lucky sod.

[Virginic in reply to OFgc]

His night time RLS and PLMS had developed before we met and married, over thirty years ago. I moved into the spare bedroom early on and we have slept apart ever since. Sounds sad, and we were both sad about it for some time, but we are a loving couple and over the months and years we adapted. He didn’t used to have sleeping problems with his RLS, very fortunately, particularly as it didn’t impact on his work life. It’s only in the last seven or eight years that it’s really impacted on his evenings (sometimes daytimes too) and nights and his sleep is much more interrupted. It runs in his family.

[Hidden in reply to Virginic]

You're quite right that there's no cure for congential RLS, which, by the sounds of it, he has.

However, there are treatments!

I'd be quite surpised if he's had more severe RLS for at least 7 years and not had any treatment.

Is that the case?

On the other hand, if he is taking some treatment, the treatment he's having may be actually be making his RLS/PLMS worse. This is a common occurrence.

It would be useful if you wetre to say what teratment he is currently having or has had.

[Virginic in reply to Hidden]

Thank you Minerva. He takes Zopiclone every few nights (not every night because of tolerance) to help him sleep, and that sometimes makes a difference.

For the RLS itself, he doesn’t want traditional RLS treatments, for fear of augmentation. Opioids do seem to be the most effective, and he knows this, but he’s afraid of the well-known risks and absolutely doesn’t want constipation. (IBS and constipation have been a problem for him throughout most of his adult life. ). He mostly seems to take his RLS in his stride (pun not intended), but interrupted nights are becoming noticeably more frequent and troublesome. Sometimes the pills don’t help enough and next day, as you might expect, the RLS is worse.

[Hidden in reply to Virginic]

As you say, Zopiclone may be of some help with sleep. However since it will have little or no effect on his RLS/PLMS symptoms, any help will be minimal. It is the RLS/PLMS which disturbs his sleep.

Opioids are not the only medications used for RLS. They are considered "second line" medications. There are, before that, "first line" medicines which can be effective.

Before that, there are non-pharmaocolgical remedies that can be tried, which in some cases can be effective without any medication.

I hope to give a brief outline of these below

The main causative factor in primary RLS is iron deficiency and iron therapy is the only actual treatment for RLS. Other remedies only give symptomatic relief.

Another major mediating factor in RLS is inflammation and I note the mention of IBS.

Anybody diagnosed with RLS should first have blood tests for serum iron, transferrin and ferritin.

A simple guide is that if ferritin is below 75 then it can be beneficial to start taking an oral iron supplement. Raising ferritin to 100 this way can benefit 50% of people.

Bearing in mind the gastrointestinal upset that oral iron can cause, it's best to take "Gentle" iron, ferrous bisglycinate and only take it once every two days.

If ferritin is above 75 but below 200, then benefit can be gained by having an IV iron infusion.

see this link

sciencedirect.com/science/a...

Other supplements can help with RLS. These inlcude vitamin B12, Vitamin D, magnesium and anti-oxidants e.g. celery juice (tablets).

The next step is to check whether there is anything aggravating his RLS, making it worse.

The main aggaravating factors for RLS are other medications being taken for a variety of conditions. There is quite a long list of these. If your husband is on any other medication, it's worth saying what.

Other aggravating factors are mainly to do with drink and diet.

Anything with sugar in it, alcohol and caffeine can all make RLS worse, more or less the same day.

In addtion and in the longer term, anything which causes gastrointestinal inflammation or inflammation generally can make RLS worse.

This can include IBS, SIBO or H Pylori infection.

Some people are sensitive to, (but not necessarily allergic) things such as gluten or lactose.

A diet with limited carbohydrate, low in oxalates or an anti-inflammatory diet can help. Some people can manage their RLS by diet alone. I would add - they're very lucky!

Any autoimmune condition can be associated with worsening RLS including rheumatoid arthritis. There are also other medical conditions which can either cause "secondary" RLS or make it worse such as anaemia, thyroid dysfunction, diabetes, kidney disease or peripheral neuropathy. If any of these are relevant, he may be aware of their symptoms.

If you read other posts in the forum, you'll see that people try a variety of remedies for relieving their symptoms ranging from lotions or oils to devices. It may be a matter of trial and error, what's best

Note that if anybody suggests CBD oil, my personal opinion is that any CBD oil you can legally buy in the UK is not really going to work.

When it comes to medications. THere are two main classes of medication that are used as first line treatments for RLS. Neither are ideal and both have their side effects.

The main consideration about these is that the benefit you get from taking one should outweigh the side effects.

My personal experience is that I am currently happy with the medication I'm taking. It controls my symptoms to a satisfactory degree without any significant side effects.

The more traditional first line medeicines for RLS are the "dopamine agonists" (DAs), pramipexole, ropinriole or rotigotine. It is these that are strongly associated with dopaminergic augmentation. So much so that there are guidelines for RLS that recommend they no longer be used.

Alpha 2 ligands are recommended instead, pregabalin or gabapentin. These have a significantly less risk of augmentation.

If your husband's quality of life (and yours) becomes so compromised by his RLS then perhaps time to consider a medication.

You may find this link informative

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

[Virginic in reply to Hidden]

Many thanks Minerva. I’ll go through your suggestions slowly and perhaps put some possibilities to him.

Sometimes as an RLS spouse I need to rant a bit too. Not about my husband himself just the unpeacefulness RLS can bring!

[Hidden in reply to Virginic]

Yes it's good to have a rant now and again.

This forum I find is a safe place to have a good old rant. I indulge myself now and again.

You'd like to.think.that there should be justice in the world, but the evidence suggests there isn't. I have to rant at the injusticeness of things.

Who invented RLS?

[RCHD]

I understand I’m in the same position as you