Driving me crazy

[Squirmy69]

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.

[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 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]

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 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 in reply to Squirmy69]

Night times can be rough!

[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 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 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 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 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]

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

[Maymount in reply to Bieler]

Yes tramadol(50mgX2) around 5oc each day works for me. The trick is to take them well before any restless leg symptom manifests itself. I'm weaning off pramipexole v slowly. Taking the whole summer and longer. Down to 2x .088 tabs now. Wondering maybe tramadol is the way to go for me and not take gabapentin or pregabalin atall. Or shld I introduce pregabalin at the end stage? Thanks for everything people on this forum. 👃

[Bieler in reply to Maymount]

I’m glad it helps and hope you can get off other drugs you took for it. Personally, I think you can but everyone is different

Tramadol has been a Godsend for me and the only thing I take for RLS. I just happen to stumble upon it on another forum and so many people were saying how it saved them. I was having a terrible flare up all 4 limbs for 2 full days. So, I dragged my weary body into my medicine cabinet and found some old tramadol pills I was given for an injury.

I took 2 50mg HCL at once and within an hour all my pain disappeared and I was up out of bed! It was a miracle.

Saw my dr the next day and as I told her what happened; she was already writing out a script because she knew how long I’ve been suffering with RLS.

I originally was given 8 tablets per day(100 mg 4x day) but I found that made me sleepy so I went to 6 and then 4 50 mg per day. I did this myself with no ill effects and I’ve never had to increase. They still work just as they did on day one.

I’m praying that I am never without Tramadol because I’ve suffered with RLS since I was a child.

Tramadol helps me with no other pain. My dr said although meant for pain, it seems to do something neurologically and she is happy to write me a script every 6 months since it helps. She has since had others who suffer from RLS and said that Tramadol has helped them also

All my best to you!