Restless Legs Syndrome (RLS) Discussion Board

Thank you Steve. I'll look for that article in Nightwalkers Spring 2019.

I realize this is an old thread! But is there anyone out there who can give advice on finding a doctor? I did go once to Dr Durphy in Albany, NY. I live in Upstate NY and drove 3 hours to get to an appointment with her but then followed up with telehealth appointments with nurses after that. I didn'...

I'm interested in your assessment of Dr Durphy in Albany. I live in Upstate NY and drove 3 hours to get to an appointment with her but then followed up with telehealth appointments with nurses after thatand I didn't end up having a good or helpful rapport with her. (Maybe because I was only able to ...

Hi Jackolette, Frustration is the word!! Okay night, bad night, miraculous good night - it's inexplicable. I just painstakingly made a chart of my various iron levels over the past year including the Ferritin which has stayed high after my iron injections last December. Hemocrit remains low so they'...

Hi Jackolette
2 months after my 2 Injectafer injections my Ferratin level was 596 (up from 55 and 61 on previous tests).

I am back on Gabepentin after giving it a half-hearted try last year. I think that I am hyper sensitive to taking medication (at least in my head!) When I have a night that is less bad than the one before I tell myself that the 200 mg of Gabepentin that I took was helping and maybe I should just sta...

Regarding the cost of my Injectafer infusions last December... I tried to find out what they would cost beforehand but did not do a very good job with that - I was so certain that increasing my ferratin levels would be the answer that I was thinking "cheap at any price!" HOwever, we have a very high...

I am willing to try a low oxalate diet to see if it would help with my RLS. I spent the weekend clicking through the Trying Low Oxalates FB page. I am not a regular FB user so I find it not that easy to navigate. I posted a question on there somewhere and now can't get back to it to see if someone a...

(Just editing this post because I see it doesn't belong under Lyrica/Pregabalin heading! I'm not taking Lyrica at this moment.) Now it's been 3 months since my iron injections and unfortunately, the RLS does not seem to have been helped by them. My iron levels are sky high but I can't say that I exp...

I had Injectafer infusions in December and was hopeful that it would be a game changer. My ferritin level was 55. At my follow up appointment today with the hematologists she said that iron levels were much better. She recommended 2000 mg of vitamin 12 as that level was very low. Unfortunately, RLS ...

I was taking 75 mg of pregabalin for about 3 months. Maybe this is not long enough to give it a fair shake but I noticed no abatement of my RLS symptoms and was reluctant to keep taking it. I tapered off and stopped it and sypmtoms are about the same. During this time I also had an iron infusion fro...

That's helpful advice, thank you.

Hi, I am wondering if I should try to wean myself off of Pregabalin before my IV iron treatment coming up in 12 days? Won't it be easier to tell if the iron is helping my RLS if I'm not on Pragabalin?

Hello,The RLS journey continues. I tried gabepentin and did not notice a difference in my symptoms so now I'm on pregabalin which does work for me. My question is this: I have stumbled upon a hemotologist who doesn't seem to know much about RLS, but who is very willing to prescribe Injectafer. My se...

I read these posts about leg pain with interest. I am an active person, biking, swimming, Pilates, etc., and I am familiar with muscle soreness. But ever since RLS kicked in with a vengeance about a year ago I have constant soreness in the back of one leg in particular - as if I pulled a muscle. Thi...