Pregabalin for RLS-like dysesthesia

[howbeit-abroad]

Hi folks,

I saw Prof Walker in the past, who believes I don't have RLS (as my symptoms don't quite fit - sensations don't abate on movement, aren't primarily at night, don't respond to gabapentin or opioids).

Haven't been able to see him again recently but another neurologist suggested pregabalin. Annoyingly this neurologist thinks my symptoms are likely caused by anxiety. I don't think that's plausible as they occur even when I'm totally calm, although anxiety can make them worse.

Is it worth trying pregabalin given that gabapentin gave me no relief, even at relatively large doses?

Thanks all!

(Has been so hard dealing with these symptoms for so long, RLS or not. I feel for you all and appreciate your help so much)

[SueJohnson]

I agree with Professor Walker. It certainly doesn't sound like you have RLS. And if gabapentin didn't help, pregabalin won't.

[howbeit-abroad in reply to SueJohnson]

Any thoughts as to what I should do?

Walker mentioned it might be medication-induced, although last time I saw him said “these things often don’t have a very satisfactory outcome”. Switching to vortioxetine hasn’t helped. I wonder if it’s caused by serotonergic drugs more generally.

Should I just try and go antidepressant-free? Seems almost impossible with my mental health in its current state, but not sure I can cope with this.

[SueJohnson in reply to howbeit-abroad]

I'm sorry - I don't have any advice for you.

[howbeit-abroad in reply to SueJohnson]

Thanks again for all your help so far, Sue ❤️

[ChrisColumbus]

If the diagnosis of dysesthesia is correct, treatment depends on identifying the cause. This can be difficult to establish and sometimes the only way forward seems to be through trial and error.

Various medications have reportedly been found to be helpful in different cases, including:

gabapentin (Neurontin), pregabalin (Lyrica), duloxetine (Cymbalta), amitryptyline (Tryptizol), nortriptyline (Pamelor), desipramine (Norpramin), clonazepam (Klonopin).

Some of the above, such as duloxetine and amitriptyline, plus vortioxetine (Brintellix) which I see you've been taking, make RLS worse for many. But as you've tried gabapentin, and if you *aren't* suffering from RLS, it may be worth asking your neurologist whether you can trial any of the above.

Good luck!

[howbeit-abroad in reply to ChrisColumbus]

Thanks Chris, I really appreciate it.

[Keith1231]

IF you do have RLS then look at other medication you are taking as some can make RLS worse. Antidepressants being one.

[Shellyj65]

I've had a horrendous washing machine feeling from feet to head for a year now. Was on duloxetine. They then tried me on hrt those mixed together was when this feeling started. Whenever I sat down to rest day or night. I've been on pramipexole for rls for 7 months. 5 weeks ago I thought can't do this no more. I stopped my drugs and the feeling has nearly disappeared.