Plh

[1234kids]

I just joined because once again I have RLS with pain and I can’t sleep.

[Hidden]

Sorry to hear this. I'm not doubting your experience, but when anyone says they have pain with RLS I always wonder if they have some other nerve problem. I've never had pain with RLS.

Perhaps if you could give more detail of what's happening with you, folk.on here could help.

[1234kids in reply to Hidden]

I have spinal stenosis and had major back surgery two years ago this causes me much pain in my legs and then I also have RLS which I had moderately when I was younger but it has become much worse since diagnosed with nerve damage and my operation

I was on Mirapex but when off because it was no longer working I’m also on oxycodone for pain which seems to help but I don’t like having to take it and often resist which causes my RLS to get out of control and cause sleepless nights

[Hidden in reply to 1234kids]

Thanks, that makes things much clearer. The pain you experience appears to be neuropathic rather than due to RLS.

It's good that you managed to get off the Mirapex after it stopped working rather than increasing the dose as some doctors do.

You don't mention, but I wonder if you have ever been prescribed Gabapentin or Pregabalin. These alpha2delta ligands are well recognised as being useful for treating RLS. However, they are also quire effective for relieving nerve painnas well.

I have been taking Gabapentin since August 2018 for nerve pain AND I have RLS

[1234kids in reply to Hidden]

Yes I’ve been taking gabapentin for 2 1/2 years and they have increased the dosage to help with restless legs I am going to Johns Hopkins in September to see a neurologist that specializes in our RLS. I’ll be interested to see what he has to say about medication I’m taking

I also am taking for floroxitine which I know can probably cause problems as well but I’ve been taking it for probably 20 years with no previous problems with RLS until my surgery

Thank you for your concern and your information!

[Hidden in reply to 1234kids]

Do you mean Fluoxetine (Prozac). You're right, SSRIs like fluoxetine are renowned for making RLS worse. I appreciate thst you were taking it before your surgery apparently without ill effect, but it may still be a factor.

You might find my little debate of some interest

healthunlocked.com/rlsuk/po...

I hear good things about John Hopkins.

[1234kids in reply to Hidden]

Thank you I may talk to doc about getting off Prozac