Ziggy, Sue and Jools

[MumofBella]

Thank you for your input. I wanted to wait a while until I gave my report on how I’m doing.

My GP phoned me the same day that I questioned being prescribed Duloxetine and took some time explaining things, refuting evidence of wholesale problems with RLS and persuaded me to follow his advice. He said the drug would be life changing!

Last night was my second on Duloxetine and I slept very soundly with no pain and not a hint of RLS.

I can’t really judge yet as I feel it could take a week before I could say things have really changed - I could have had one of my good nights. This morning I feel bloated and a bit weird but I’d expect something to be different and I’m assuming that will wear off.

I’ll report back maybe next week because if it does work I think it’s important that others aren’t put off using a drug that might be beneficial. Until then my fingers are crossed things stay good!

[XYZ888]

Oh MumofBella, that’s really good news, so pleased you’ve had a few good nights sleep, long may it continue. I’ll certainly look into it myself. Thank you for this info. XX

[SueJohnson in reply to XYZ888]

See the original post at healthunlocked.com/rlsuk/po... as it makes RLS worse for most and it is not prescribed to help with RLS. I can't explain why it is helping MumofBella.

[ziggypiggy in reply to SueJohnson]

I think the doctor is really pushing it for the pain relief because it works well for that. I think he may be unaware or just not concerned about how it will impact her RLS. As I mentioned in a post below, it may be the pain or underlying fibromyalgia that is triggering the RLS in this particular case. Who knows? Wee bit of Luck. Splash of serendipity.

[SueJohnson]

I'm pleased for you 😀but I certainly can't explain it. It's against everything I've ever learned!

[marsha2306 in reply to SueJohnson]

Agreed, I took it for 2 months before I knew and paced floors for hours at a time each night

[davchar23]

Dear Mumobella,

I was prescribed Duloxetine in ther past but not for RLS and as i remember it had bad side effects and certainly didn't do anything for RLS. However if it works for you great!

Best regards

Davchar

[SueJohnson]

It may work because of a placebo effect. I was reading an article in the Washington Post today and 1 person was hobbled by lower back pain from scoliosis and even knowing she was given a placebo now is not only pain free but is a competitive kick boxer.

[ziggypiggy]

Odd that it helps the RLS. Glad that it is helping the pain and you are sleeping.. I wonder if in your case it is the pain that is triggering your RLS and that relief from the pain is helping you sleep through any RLS symptoms the duloxetine may bring about. Keep us updated. As Sue mentioned, honeymoon periods on medications can often be deceptive. A month out will give you a more accurate impression.

What dose are you on? 20mg? Sexual side effects can occur on this med. Pretty common. Lower libido and such. May not be to bad at 20mg.

[MumofBella in reply to ziggypiggy]

I’ve been on Duloxetine only four days so far so it’s much too soon to tell what’s going on. It concerns me though that there’s an anti Duloxetine movement here as there’s no hint of a warning on the drug leaflet about RLS. Believe me, this drug has a list as long as your arm of side effects so they’re pretty thorough. I have many problems with my lumbar region, one being sacroiliitis and my RLS has always seemed to come from that joint. I’m waiting for a steroid injection into the joint to see if that makes any difference. You’re right in that the drug was prescribed for me for pain. I’m not too worried about the sexual problem as I’m almost 78! I can’t recall the dosage but I know it’s the lowest available. I asked my GP about the possibility of the drug causing or exacerbating RLS and he read from his screen to say that there’s only a tiny percentage of the population who may be affected. Given all of this I’m inclined to think that maybe other members of the forum shouldn’t be deterred from trying anything to help, including Duloxetine.

[ziggypiggy in reply to MumofBella]

Have you always had trouble with RLS? Does it run in the family?

[MumofBella in reply to ziggypiggy]

Hello! My RLS started roughly in my mid teens maybe with puberty, that was about 1960/62. I used to sit in our living room in the evening trying to see how long I could bear the feeling in my knees before I did anything. I ended up punching my knees because I didn't know that movement was the key. In those days RLS officially didn't exist, there was no name for it let alone any treatment or drugs. Half of my family was in Ireland and half in England so I never found out whether anyone else suffered. Unfortunately I seem to have passed it on to all three of my children but in different degrees, my daughter is the worst affected. How about you?

[ziggypiggy in reply to MumofBella]

Oh yes. Long family history.

[JunieBJones]

MumofBella, I have been of duloxetine 90mg/day for several years and I never felt it contributed to my RLS. It was prescribed for depression and fibromyalgia. Having been on different antidepressants, I felt that this was the most effective with the least side-effects. I take it in the am as I think it has a bit of an energizing effect. Best Wishes to you

[ziggypiggy in reply to JunieBJones]

90mg is a pretty aggressive dose. I'm glad to hear its helping with your depression and fibromyalgia. I too have found it one of the least bothersome of all the antidepressants for RLS. I've been limited by sexual side effects from taking more than 20mg But as I get older that trade off balance may tip in favor of an increased dosage as priorities change.

[MumofBella in reply to JunieBJones]

Thanks for your comment. I’m still adjusting to the drug but don’t think it’s made any difference to me one way or the other yet. My GP has been terrific and explained everything to me, telling me that I’m going to feel so much better but it might take a month to really kick in, so I’m crossing everything!!