Struggling again : Hello again my... - Restless Legs Syn...

Restless Legs Syndrome

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Struggling again

Netball-50 profile image
8 Replies

Hello again my knowledgeable friends. Hope u all safe from this awful covid. I'm seeking advice again. I thought I'd got over the worst taking codeine for twitches but hence the dreaded twitches have come back. Back to the spare room for me! I have yet another appointment at the hospital in Dec covid permitting but I'm sure they will tell me to go back on a DA. Nothing else is working although I am back on sertraline 50mg but I've needed to due to low mood anxiety so this may b contributing I'm at a loss again 😢 I take the iron byglycinate and magnesium every other day just have to put up with it as usual 😢

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Netball-50
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Jules1953 profile image
Jules1953

Some antidepressant medications have been known to make restless legs worse.

I have over the last 2 years weaned myself off Sifrol (Pramipexole)

I suffered terribly with augmentation from being on Pramipexole for a long period of time.

I am now using Temgesic sublingual 200mcg tablets to control my RLS.

Currently placing 3 of these micro dosages of Buprenorphine under my tongue during the night.

This is all I am using now.

Sorry to hear you're struggling again.

It does sound as if the sertraline is causing you problems, but if it's necessary then it can't really be avoided.

In which case it's a matter of what can be done to control the RLS symptoms.

Since I note that you didn't find an alpha 2 delta ligand helped then it would seem your next option would be an opiate.

It seems that quite a few folk are finding success with temgesic which is a low dose of buprenorpine. I know of at least one member in the UK who have succeeded in getting a prescription.

As you seem to suffer recurrent depression I doubt if either IAPT or counselling will be of much help, but you may find the following link of some interest.

bemindfulonline.com/

Netball-50 profile image
Netball-50 in reply to

Thank you again manerva what is buprenorpine?? I take 2 gabapentin early t time and 2 before bed this worked b4. I had weaned off pramipexole and was just gabapentin 300 mg. X4. But I've had to on sertraline for my mood and anxiety. Only thing that takes off the twitching is the codeine at the moment. When I mentioned to gp about going on lrega alin they prescribed a low dose and not the one stated on here so am in a predicament at the moment?? Thanks again for your great advice

in reply toNetball-50

Buprenorpine is an opiate, but it's more potent than codeine and less side effects.

There's been a few posts about it on here e.g. from Jules1953

YodaDog profile image
YodaDog in reply toNetball-50

Shumbah as well, search for her posts on here.

Hey Netball,

So sorry you are going through this. I know this well.

I can say that this is similar to me, so I'll tell you a little about what happened here. I take codeine all day every day for crazy legs and arms. Came off an AD because I thought that was mixing with HRT and causing problems. So far, it doesn't look like it was. However, in order to ease back on Duloxetine, which is the evillest drug to come off, I decided to start Sertaline, a drug I go back to, on a very low dose, and then ease back on that instead (a bit easier to come off). So I split 50mg tablets, 25mg each day, and my legs and arms went barmy. Barmy.

So I stopped that. Somebody on here has suggested the Buproprion is a more RLS friendly AD, and so I have that in mind for when I have to go back on an AD, as inevitably I will. It is a drug I've had in the past but being on so many I can't recall how responded. I have been on Lamotrigine for years, but have never managed to cope with the depressive side of bipolar on that alone.

Sooooo, reading a lot on here, I bought a whole bunch of stuff! I am taking a vitamin C and iron tablet first thing (I'm yet to get a proper iron test that folk with RL need - learned that on here too!). I had a magnesium salt bath in the afternoon yesterday. And then I applied a hemp cream I discovered on Amazon that had some brilliant reviews. I do think a lot of my RL symptoms are connected to Fibro/M.E pain I get and that when I'm most pained, I'm most twitchy. So I wondered if this would help.

I smeared my arms a bit first to see if I broke out in some weird rash, as I'm great at that, and all was fine, so I covered my legs just before bed with no hope in my heart.

I don't know when I dropped off, but it was certainly before 11 and I'm only just up at just before 7. This. Is. Unheard. Of. And also managed to only have 3 doses of codeine yesterday, and nor am I clawing at the box this morning to get the dose down me. And this had not been possible for a good few months.

So something in that little routine certainly helped. Maybe not forever, maybe not even today. But for once I've woken thinking, after years of the most severe symptoms, that I have a bit of wiggle room, as it were - my body is responding to something in a good way.

I've rambled, but I hope it gives you a little food for thought. Yes, the sertraline certainly did that to me, so do think about whether you can try a different AD that might be friendlier. But also keep wiggling with the basics - the vitamins, the baths, and maybe look into the hemp cream too. I know it won't work for everybody, but I'd given up hope completely. This morning I have some hope back again.

Biggest hugs your way. It's so hard to juggle these things with other conditions going on, I know. So, so hard. But with this site and all our heads together, I think there is some route for all of us somewhere out there.

I hope today is as gentle to you and twitches are as few as they can be.

X Pix

puzzler1 profile image
puzzler1

I’m taking Temgesic the same as Jules1953.

It’s worked like a miracle for me so it’s definitely worth a try. The only problem is persuading your doctor to prescribe it ! I’ve posted some information on this forum for guidance but don’t hesitate to ask any questions. Temgesic for RLS is fairly new so doctors are reluctant to try it which is sad because it’s amazingly effective and there’s little side effects.

Flippo123 profile image
Flippo123

Hi there, unfortunately Sertraline can often make RLS worse, you can try to reduce this by taking it in the morning as soon as you’ve had something to eat (this is recommended as it can cause heartburn on an empty stomach).

You may also, with the advice of your GP, change onto a different anti-depressant.

I hope you find the symptoms abate

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