Restless Legs Syndrome (RLS) Discussion Board

I have been off ropinirole for 35 days now!! And for the past 3 weeks I have been taking 20 mg.oxycodone. I was hoping to have some kind of normal life by now. But now feel the need to nap 2 and sometimes 3 times a day. I think I am getting 6 hours of sleep a night. However, my Fitbit registers onl...

Interesting about the iron and the omeprazole. It cannot help, for sure, and it definitely seems like it could hurt.

Whatever the cause for the two good nights, it's a win!

So far, I've had three treatments. I don't know yet how much iron I have after each treatment, as I haven't had a chance to talk with the hemotologist yet. And I have at least one more treatment before I see him. But today, for the first time, I lay down for a nap (something that used to be impossi...

My Harvard and Yale educated Oncologist / Haematologist gladly accepted the article Rust suggested. I have 2 infusions scheduled a week apart. I'm excited and guarded in my expectations. If it works then I have to find a way to get maintenance. I'm hoping he takes me on like a chronic anaemia patie...

Closing the loop: I've been in Prescott, AZ for a little over a year now. It's taken nearly all of that time to find a neurologist. At first, I was only able to use the local Sleep Doctor. He's a pulmonologist treating my apnea, and took over care for my RLS. He has supported my severe RLS and cont...

Had minimal business with Pittsburg, but what I received far exceeded any medical outlet I ever felt with. Absolutely treated with respect and concern I never received from the 2 major clinics in Cleveland. One Video with Dr. Aggarwal was worth more than several I had with one of the major Clevelan...

Stainless wrote: ↑

Wed Sep 04, 2024 3:14 pm

I just can't imagine find something that works so well and having the rug puled out. I've battled this for 67 years now and would trade my first born for a week of relief.

Right?

Thank you so much for your support and thoughts. My doctor did switch me to 20 mg hydrocodone. I took it Monday night and it worked for the most part. I took it last night and it didn’t work, RLS symptoms all night long. Not sure what to think or do at this point. Any ideas? Ugh. That is pretty mis...

TimG wrote: ↑

Tue Aug 27, 2024 3:18 am

Does Dr Buchfuhrer give a reason for the full Iron Panel vs. only a Ferritin?

What Steve said .

Oh no! Those options are all so disheartening. My ferritin is always over 150. It sounds like my next step will be to have the Tramadol switched to another opioid? This disease is awful. I am tired of being tired. Thank you for your ideas. I hear you! And I feel for you - it's been a long time sinc...

Dr Buchfuhrer always does both when I go in.

Good Morning All, well today marks 135 days since my last dose of dopamine agonist and I feel great!! The symptoms/intensity of my DAWS is finally "slowly" subsiding which I believe will eventually be a thing of the past and the intensity of my RLS at this point has become more of just a nuisance. ...

ddkjohn7 wrote: ↑

Sat Aug 24, 2024 3:46 pm

Thanks Betty. A second night of good sleep. Wow what a difference it makes.

YAY!

So many options, sadly. 1. You can augment on tramadol. 2. Your symptoms can worsen naturally - this may be your new state. 3. Some of us have felt that when we went off of DAs and were quite augmented, that our symptoms were definitely worsened. Doctors say this cannot happen, however. 4. It could ...

So sorry you went through that. It still frustrates me tremendously that doctors do NOT understand what to use to treat us.

So happy you got some sleep with the gabapentin. Rustsmith had great advice. Keep us informed as you go through your journey and ask us anything - we're here to help.