I have RLS in my legs. To me it's deep deep throbbing pain esp in thighs.

[Barbee1]

Does anyone have symptoms like that? Meds work, but wear off. It's constant.

[Madlegs1]

What meds work?

It really doesn't fit the normal criteria for rls. An uncontrollable urge to move limbs.

Pain is not a main constituent, but does occur for a minority of people.

Have you been tested by a neurologist?

Some form of neuropathy seems more likely.

[Barbee1 in reply to Madlegs1]

He, MDS told me it was Restless Legs. Gave me Horizant. It worked alone for about 6 months and pain came back. So I've been on 40 mg of baclofen since 2012. I had to build up. I have to get up in the middle of the night if I had stress and take 2 more prescribed. Plus 2 diazapam twice a day. This is for Dystonia. He said my legs were not Dystonia. I think he knows but just gives me what I need by my symptoms. The pain is so bad I would die. No one can deal with this kind of pain, then all of the sudden it goes away like it was never there. One neurologist said my legs were like 2 tree trunks. I'm not overweight. The next month I got on Horizant. A combination of Gabepentin and something else. He has in my chart RLS.

Oh, it's in my arms. I can hardly lift them. My balance is off. Ive had strange symptoms since 2005 when I first lost my balance trying to get on a doctors scale. It terrified me. I had no pain in my legs for 10 more years.

[Pippins2 in reply to Barbee1]

Do you have the urge to move your legs along with the pain? X

[Barbee1 in reply to Pippins2]

No. The pain is muscle spasms, bad. i can feel them contract and stay contracted, they won't relax. i sure am glad I already had a movement disorder doctor before. I told him the pain was so bad i felt like i was dying. that's when he gave me the meds. this was in 2012. it's a dystonia cocktail on of the doctors told me. He says it's RLS. Horizant is for RLS.

[Pippins2 in reply to Barbee1]

Ok well I am afraid that I disagree with him. Urge to move is the absolute MUST HAVE for RLS x

[Parminter]

This does not sound like RLS.

Ask for a dose or two of a Dopamine Agonist, as a diagnostic tool. If it works, it is some odd sort of RLS. If not, it probably isn't.

Whatever it is, good luck. It sounds miserable.

[Barbee1 in reply to Parminter]

thank you

[Barbee1 in reply to Parminter]

moving helps the pain. so does coffee. so far baclofen and horizant make my life bearable. stress makes it worse. my balance is horrible now. it's obvious something is wrong now. having trouble getting out of a chair. losing muscle coordination now. every one is different. i hate not being normal. no one could live with the pain in my legs. muscle atrophy now all over. i don't think the MDS knows. going to dr. tomorrow. something is wrong.