Leg Pain in addition to restlessness

[AndreaK]

I have suffered with RLS for many years but recently (past year) it has become much worse. In addition to the restless feeling, I also have pain, mostly in my upper right leg. The pain seems to move around some, but is also most frequent in two different spots...its not a muscular pain. Almost like a throbbing inside my leg. I only notice the pain when I'm not moving around....sitting, driving and it bothers me a lot when I sleep.

I've talked to my doctor about it and she doesn't seem particularly concerned...but its really started to affect my quality of life. I guess my question is...does RLS sometimes cause actual pain? I am not sure what tests I should be asking my doctor for. We've tested my ferritin levels...at first I was at a 47 and she prescribed ferrous sulfate. I've been taking it for several months and my last check was about two months ago and i was up to 59. She says this is a normal level...when I complained that I'm still having RLS and pain symptoms she told me to keep taking the ferrous sulfate and offered me Gabapentin. I am not interested at this point in Gabapentin....and I'm not convinced this pain in my leg is from RLS. Any advice? Thank you.

[Polar Bear]

First thing, your level of 59 is a normal level for normal people. We are RLS sufferers and you need your Ferritin to be up over 100. Your Ferritin is still way too low... for you.
About the pain in your leg. My own experience is that I tell myself pain is acute/sharp, the sort of thing that would stop me in my tracks.
Therefore I don't suffer pain with my RLS but I do suffer often with deep aches. Also when I say I suffer aches with my RLS, I mean that I suffer them alongside the RLS. Not that it is a part of my RLS. The aching is random but is usually in the evenings/night and will sometimes respond to a simple ibuprofen of paracetamol, sometimes not. I have other medical issues where this ache could be a symptom i.e. fibromyalgia and osteoarthritis., who knows.
And this is the problem, RLS affects us all differently, some feel they do indeed have pain and then there are different triggers and different causes, the treatments affect us all differently, and most often we are working with trial and error.
We take heed of what has helped others and we try this for ourselves. Often we strike lucky. A willing and cooperative GP is a blessing.

[AndreaK]

Thank you for your response! I appreciate your insight, it sounds like what I am feeling is “normal” for RLS sufferers. I will talk with my doctor about ways to increase my ferritin levels and perhaps that will help.

[gchamp]

I have lived with RLS for about 40 years. I’ve tried several different meds for it. Does anyone take an antidepressant along with their other meds, just to take the edge off. Sometimes I get so frustrated, I cry.

[Polar Bear]

I have been taking an antidepressant Citalopram for many years. Starting it was scary because of the fear of a negative impact but I believe I got away with it.
Recently I saw a new neurologist at a Movement Disorder Clinic. She was excellent. In trying to get rid of anything at all that could be negative for my rls she has asked me to reduce and come off the citalopram. At present I'm on a half dose without issue.

Dr B who is an esteemed RLS expert and who is very familiar to this discussion board suggests that if a patient needs an antidepressant then it should be prescribed. If the antidepressant causes an increase in RLS symptoms then these increased symptoms should be treated accordingly.

[freddie]

I also seem to be having aches in legs but have now started feeling burning or freezing feet. Driving me crazy. I have had RLS since I was 20, now 72 and it is so much worse it controls my life, not just my nights. I live in New Zealand and my doctor was happy with my ferritin level of 360 ug/L. How does that compare with overseas levels when they talk of a need for 100?

[badnights]

@freddie Your ferritin is plenty high. Unfortunately it can be elevated by inflammation or infection. Many people with chronic inflammation will have elevated ferritin, so in that case it no longer can serve as a marker of sufficient iron in bodily tissues. Basically, if your ferritin is low (<100), you know that some organ of your body is low in iron. If your ferritin is high (>200), you don't know anything (because it could be high because you have enough iron everywhere, or because you have inflammation somewhere.)
Re burning feet see viewtopic.php?p=106300#p106300


@everyone, aches that aren't clearly located in a muscle or joint, and can't really be located in any exact spot, especially if they seem to move around, those aches/pains are probably part of the WED/RLS symptomology. The key to telling, again, is whether they are associated with an urge to move and resolve on movement.