walking around for three hours - Restless Legs Syn...

Restless Legs Syndrome

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walking around for three hours

purple-flowers profile image
11 Replies

my urogynaecologist has put me on 10 mg amitriptyline every night. I started it yesterday. I was staggering around for three hours. My left leg and foot were jumping with rls. I am also on 900 mg of gabapenguin and 20 mg of fluoxetine. I believe the fluoxetine and amitriptyline are making my rls much worse. I’m taking the fluoxetine for depression and pain following failed back surgery. The amitriptyline is for interstitial cystitis. I tried coming off fluoxetine very gradually over six months but my rls was no better. Any advice please?

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11 Replies
Joolsg profile image
Joolsg

Amitriptyline worsens RLS for 99% of us. It's listed, with fluoxetine as a trigger med.Amitriptyline is often given for nerve pain.

For the interstitial cystitis, you could try waterfall D mannose, and take 3 tablets daily. Also medical cannabis can help.

I would stop the Amitriptyline.

If you managed to get off fluoxetine and your RLS didn't improve, that could be because your brain iron levels were still too low and that your 900mg dose of gabapentin is too low.

So, stop Amitriptyline, slowly reduce fluoxetine again, whilst increasing your serum ferritin above 200 with iron pills/infusions. But first get full panel,morning, fasting bloods.

Ask your doctor for an increase in gabapentin. The average is 1200-1500mg,taken at night in split 600mg dosed, 2 hours apart.

Another option for the interstitial cystitis is buscopan. It stops bowel spasms, but also reduces bladder spasms. In Austria, it is often given for MS bladder spasms and it does help.

purple-flowers profile image
purple-flowers in reply toJoolsg

Thankyou for telling me about Buscopan. I will try it. I have been taking D mannose for years. Medical cannabis didn’t help me. It did at first but after a year it stopped helping. Am collecting my serum ferritin results tomorrow from my GP. I will reduce the fluoxetine again I am on 20mg a day I read you should only come down by one a month can I do it a faster? Thankyou for your help!

Joolsg profile image
Joolsg in reply topurple-flowers

Go as slowly as you can. Anti depressants affect brain chemicals, so a slow withdrawal is always best. Much slower than most Doctors recommend.

SueJohnson profile image
SueJohnson

You mentioned you were having the ferritin test on Nov 6th. What were the results?

Are you off the pramipexole?

ocre profile image
ocre

Amitriptyline will make RLS worse and your neurologist should know that as it is a well known fact.

purple-flowers profile image
purple-flowers in reply toocre

It was prescribed by my urologist who wasn’t aware that I had restless legs.

Simkin profile image
Simkin

I simply cannot tolerate amitriptyline. It makes my rls 100 times worse.I avoid it at all costs.

FluteE profile image
FluteE

My IC didn’t get better until I had the medicine placed in my bladder (1x per week for 3weeks). I also, increased my water intake (recommended amount ) and started a low acidic diet (I just googled what foods not to take, eliminated them, and then slowly introduced one at a time. This helped my bladder to heal and then I could find my triggers. IBS is also common to have when you have IC. Who need another syndrome when you have RLS😳🥺I do take next to the lowest dose of Pramipexole and have taken it for 10+yrs . Thought at times I might be augmenting , but other meds made my RLS worse, not the prami. For me, diet plays a huge part in my RLS and IC. I have horrible side effects with gabapentin, so that’s a no for me. I pray you find something that works for you soon!

purple-flowers profile image
purple-flowers in reply toFluteE

I had six bladder instillations during august and September. It worked for about two weeks. That’s when she put me on amitriptyline. Waiting to hear what she can do next! Thank you so much for your concern. This forum is so helpful and brings me great comfort.

FluteE profile image
FluteE in reply topurple-flowers

Oh my! I’m so sorry that didn’t provide you any relief. It’s terrible pain😫

purple-flowers profile image
purple-flowers in reply toFluteE

You can say that again. The pain is unbearable 😥😥😥

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