Driving me crazy: RLS getting worse... - Restless Legs Syn...

Restless Legs Syndrome

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Driving me crazy

Squirmy69 profile image
11 Replies

RLS getting worse every night. I am considering stopping Sertraline before I see my GP. It’s only another 4 days but I’m really struggling. My whole body is squirming. Getting 4hrs interrupted sleep a night. I really can’t deal with this any more.

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Squirmy69 profile image
Squirmy69
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11 Replies
Thebarber profile image
Thebarber

Hello, I don't know about Sertraline, but I do know things can and will get better. I had until recently years of not sleeping days at a time. I used to walk about the house for hours on end, the RLS would not even let me sit down never mind lie down. I was exhausted and close to giving up for good. I got a lot of good advice here. I know it should not be the way, but you need to educate your GP. It has been a struggle for me taking over a year and a half and changing doctors to get the help I needed. But with the help and advice I received on this site I managed it and I know you can do it too. I feel for you I really do. Good luck at the Doc's. X

Squirmy69 profile image
Squirmy69 in reply to Thebarber

Thanks for your reply. I just needed to vent somewhere. I am glad you got the help you needed and thanks for taking the time to give me your support.

SueJohnson profile image
SueJohnson

Don't just stop the sertraline. You need to wean off it as you start trazodone. Otherwise you will have withdrawal symptoms and you don't need that.

Hang in there! With gabapentin or pregabalin it WILL get better and hopefully will completely control your symptoms. Do look back at the advice I gave you before on how to take them because your doctor may give you wrong advice. healthunlocked.com/rlsuk/po...

Squirmy69 profile image
Squirmy69 in reply to SueJohnson

Thanks. I became more rational in the morning 😂. I am definitely taking your advice and info you posted with me on Monday and also taking my husband who has a stake in sorting it as he either sleeps alone or gets kicked all night.

SueJohnson profile image
SueJohnson in reply to Squirmy69

Night times can be rough!

Joolsg profile image
Joolsg

Sertraline could well be what triggered your RLS in the first place. However, you can't just stop it cold turkey.Any medication that affects brain chemicals must be reduced very slowly.

Your RLS is bad. So buy some solpadeine Max with a small amount of codeine & take it until you see the GP.

Low dose opioids are highly effective for Severe RLS BUT GPs have opioid bias, as they are taught that they cause addiction and tolerance. They do if the patient has a history of abuse, but screening and careful monitoring helps avoid this.

Opioids for RLS are prescribed at much lower doses than for pain, and tolerance ( the need to increase the dose to maintain previous cover) is rare. Dr Winkelman's opioid study shows this.

So, use solpadeine.

Buy some magnesium citrate and ferrous bisglycinate. Take ferrous bisglycinate last thing at night before bed.

It seems to work for a few people on this forum.

And remember our advice to your last post.

REFUSE Ropinirole, Pramipexole or Neupro patch. They are miraculous at first but they will ALL turn on you & augmentation is horrendous and withdrawal even more so. These drugs are relegated to 'end of life scenarios' by top experts for very good reasons.

massgeneral.org/rls-registry

Squirmy69 profile image
Squirmy69 in reply to Joolsg

Thanks so much. Given what you have said and I have found out there is no way I will take Dopamine Agonists. I’m a bit worried that pregablin won’t work completely as I was on 150mg three times daily for anxiety for the last few years but have come off it over the last 6 months. In retrospect that is probably why the RLS has got so much worse but it was already a problem when I was on it. It was better though and maybe in combination with Iron, Magnesium and coming off the sertraline (slowly) it will be more effective. Thanks so much for all your help. Going to try to get some solphadine max tomorrow as chemist shut now. Really appreciate your help.

SueJohnson profile image
SueJohnson in reply to Squirmy69

Since you were taking it 3 times daily you were only taking 150 mg at night and according to the Mayo Clinic Updated Algorithm on RLS the average dose is 200 to 300 mg - at night and the usual maximum dose is 450 mg although you can take up to 600 mg. And if you were taking sertraline at the same time that would have offset it.

On the iron were you ever able to bring it up over at least 100?

Squirmy69 profile image
Squirmy69 in reply to SueJohnson

Not had it checked yet. Going to ask on Monday was in the thirties when it was checked for IBD a couple years ago

restlessstoz profile image
restlessstoz in reply to Squirmy69

If you had IBD, I asume you mean inflammatory bowel disease, you would have not absorbed iron well at all and so adding the iron as Joolsg suggested may well be a successful move. Getting your ferratin above 200 as the experts suggest could well help your symptoms once you are off the sertraline. And it's something you can start doing right away. Good luck and hang in there. This forum is a lifesaver so cling to it and get as much knowledge about RLS yourself as you can to take to your doctor. Knowledge is power! :)

Bieler profile image
Bieler

Ask your Dr if he can prescribe you Tramadol(Tramadol hcl 50 mg)

It’s the only thing that works for me and many others on this forum. Also stay away from anything that may trigger RLS. I have hellish nights if I accidentally consume Sucralose which is in so many sports drinks and other food products. Antihistamines also trigger it. Best of luck

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