Help

[Mustanggirlgirl]

Hi this is my first post, my husband has been diagnosed with rls..he has it in arms and legs and it's 24/7. I have been researching trying to find what could help him. He seems to have worse problems after taking his anti depressant pill Zoloft. Is that normal?

[Kaarina Administrator]

Zoloft (Sertraline) is one of the medications to avoid if possible as it can make symptoms much worse. rls-uk.org/treatment

[Mustanggirlgirl in reply to Kaarina]

Thank you,, his doctor isn't much help he wanted to up the dose of Zoloft and I was thinking that's not a good idea. He has an appointment with a neurologist in November so I am hoping he will be able to provide some relief.

[Hidden]

The short answer is YES, as Kaarina says. some antidepressants make RLS worse.

There are medications for treating RLS and hopefully, if the neurologist confirms the diagnosis of RLS then he/she will prescribe something.

I suggest you and/or your husband research these medications very thoroughly as doctors tend to give very little information about them and their risks!

Kaarina's link is a useful start, you might also find this link useful

cks.nice.org.uk/restless-le...

In the meantime, there are some other things you can look at that may help relieve symptoms.

There may be other "triggers" affecting your husbands RLS, anything with antihistamines in it, some anti-indigestion renedies, alcohol and for some people caffeine. Processed sugar and some food preservatives or additives.

There are quite a few non-pharmaceutical remedies that do help and you could research these. Be careful because people often make claims about things for which there is no scientific evidence of effectiveness or even any logical connection with RLS at all.

There are, you might say, two "types" of RLS. "Idiopathic" RLS is essentially a genetic disorder and occurs on its own. "Secondary" RLS is where RLS symptoms occur because of an underlying condition.

The neurologist, or your GP hopefully will carry out tests to eliminate any underlying causes, e.g. blood tests

These could include deficiencies of iron, potassium, ferritin, vitamins D and B12/folate and thyroid hormone. Diabetes.

Also he should be examined for any neuropathy (i.e. nerve problems) either in the spine or arms/legs.

If all these are OK or minimal then your husband has Idiopathic RLS and medications will help.

[Mustanggirlgirl in reply to Hidden]

His doctor put him on ropinirole and last visit explained to him that the rls is just getting worse and doctor just said take an extra pill. So looki g forward to the neurologist, I assume that will be better help. Reading posts and talking in this group has seriously been so much help. Thank you so much, it's really hard watching him suffer. I really had no idea how horrible this problem was before. This page has been amazing thank you again

[Hidden in reply to Mustanggirlgirl]

OOOps

That changes things, see LotteM's post which explains "augmentation".

I hope the neurologist knows about it.

It appears that your husband's problem is the Ropinirole.

[LotteM]

How long has your husband taken the ropinirole and what what the original and his current dose? I ask, because ropinirole is a dopamine agonist, and medicines in this class very often make the RLS symptoms worse in the long term (and sometimes already in the short term, which happened to me). This phenomenon is called augmentation. The usual reaction from the prescribing doctor is to increase the dose, but that will only help temporarily, but actually is like putting oil on a fire and worsening the RLS. The better way is to reduce the dose. The signs of augmentstion are symptoms starting earlier in the day, symptoms restarting sooner after taking the medicine (ropinirole), symptoms occurring in other body parts and in general symptoms becoming more intense. See e.g. rls-uk.org/news/augmentation

If you think your husband may sugfer augmentation it may still pay to first find out whether there is an alternative to the Zoloft and read all you can about augmentation and how to treat it. A good starting point for the latter is the pinned post at the top of the web page. I am using te app but don’t know how to find pinned posts in the app.

[Mustanggirlgirl]

Well he was supposed to take 2mg ropinirole twice a day but he is a truck driver so he couldn't. So doctor told him to take 3mg at night. I think he has only been on ropinirole for 6 months or so. And after reading posts how addictive it is I am worried for him.

[Kaarina Administrator]

This link may also be helpful to you and your husband if you think it may be augmentation: sleepreviewmag.com/2015/02/...

This article on Augmentation by Dr Mark Buchfuhrer is one of the best RLS-UK have read.

I very much hope that the neurologist will have an interest in RLS or you may well find that you know more about it than he/she does. You have been given good advice by other forum members. Knowledge is power.

You are a most caring person to be going to the trouble to join a forum in order to find help for your husband. He is a very lucky man to have you by his side.

[Parminter]

Mustanggirl, you will get a great deal of excellent advice here, so welcome.

There is no reason your husband should suffer like this, but he will continue to do so with an uninformed doctor. (Most doctors are uninformed).

The only way to succeed is to learn all the things that your doctor has not learned - this is largely a DIY condition so far as the correct information is concerned because of profound ignorance.

You and your husband should read everything you can lay your hands on. Read all the links you are given, and scour this site - it is stuffed with information your doctor clearly does not know.

Join the Restless Legs Foundation at rls.org, and spend time at the Southern California RLS Support Group (an outreach of Stanford University) at rlshelp.org

You will soon become accustomed to reading scientific papers and understanding the important bits. Print out all that seems relevant to you and take it to your doctor. First, all SSRIs are off-limits for us, that is fundamental. But he can certainly try Trazodone.

In this condition, severe depression is common as a result of chronic lack of sleep, so getting the correct medication for the RLS is important. Depression is a side-effect, and an anti-depressant will not help with the underlying issue.

If your doctor will not listen, then dump him.

Tell your husband to join us, many of us know precisely how he is suffering. We also know that he can be relieved of this appalling burden. But accept that you will both need to work at it.

[Joolsg]

You’ve received excellent advice from everyone. Just out of interest, did your husband have depression before RLS? Often having RLS and lack of sleep causes the depression.

If he does have augmentation (& it really does sound like it) and decides to reduce the ropinirole, he will need to take time off work because he will have withdrawal symptoms and little sleep and driving will be impossible.

I hope he sees a good neurologist. In the meantime, the more you can read about RLS, the better.

Johns Hopkins university in the USA has excellent info on their website and if you can buy a second hand edition of

‘Clinical Management of RLS’ 2nd edition by Drs Buchfuhrer, Lee, Heniing & Allen on Amazon, it will be invaluable. It’s actually surprisingly easy to read for a medical book and you can show it to the neurologist you see in November.

Many neurologists are actually quite ignorant about RLS- mine put me on Amitriptyline which is known to make RLS much worse.

Reducing Ropinirole should be done very, very slowly- 0.5mg every 2 weeks. I bought a pill cutter on Amazon and it works quite well.

With each reduction in dose, the RLS becomes much worse and then settles for a while. After the last dose, RLS is unbearable and you get constant RLS and little or no sleep for 10-14 days.

Alternative meds will then help, like pregabalin or a low dose opioid but as your husband is a driver he will need to see how he reacts to the meds.

He is lucky to have you looking out for him.

I wish you both well.

[Mustanggirlgirl]

He had depression before rls. When we told his doctor that it's getting worse and the ropinirole isn't working anymore all he said was to take another pill and even asked if my husband wanted to increase dose of the Zoloft. Which all makes it worse. I am really hoping the neurologist has some knowledge. I don'tunderstand why doctors don't seem to know about rls it isn't a new issue. I just really hate seeing my husband suffer and go without sleep. I feel bad for everyone that is going through this. It seems miserable. The augmention is confusing I am still trying to learn about that. I figured after a while he would get immune to it and it wouldn't work the same is that what augmentation means? After reading posts on here of how addictive ropinirole is it frustrates me that his doctor has told us nothing about the medication. I am so thankful for this forum and how helpful and kind everyone is. I have learned so much.

[Joolsg in reply to Mustanggirlgirl]

No augmentation is a severe side effect of Ropinirole and similar meds that will happen to 80-90% of people taking dopamine agonists at high dose long term. It means the symptoms become more intense, start earlier and move to arms, hands, back etc.

Sadly the vast majority of doctors and neurologists know very little about RLS or augmentation.

The experts in the USA describe increasing doses as

‘pouring gasoline on a fire’.

There are very few experts in the UK and that’s why we have all joined this site, learned all we can about RLS and share that knowledge. Doctors don’t like it but we have no choice!

You will be such a help to him- withdrawal is hell. I couldn’t have done it without my husband- he stayed up with me massaging my legs for hours when I had no sleep at all and was twitching all over.

I wouldn’t have made it without him and all the support from the knowledgeable people on here.

[Mustanggirlgirl]

I also wonder if he has been diagnosed correctly. It's worse in his arms then legs although it is in his legs also. But I can see his muscles in arms flexing or twitching constantly. In bed when he gets the muscles jerking around it will wake me up it's pretty powerful. He says his shoulders, elbows and hands hurt constantly from it also.

[Joolsg in reply to Mustanggirlgirl]

That’s augmentation. Moves to arms and hands. I had it in my face- horrible.