Hi there....I know what you're going through. I have bone crushing pain in my legs-both of them from my low back/hips down to my feet.
I am currently in pain mgmt. b/c it is so bad.
They said I don't have RLS b/c the typical rls meds don't help me, so unfortunatly I have to take strong meds to help me.
I'm still being tested to find a solution.
Good luck to you!
kkmpk: what is the pain like in your arms and legs....like bone crushing pain, is it your whole arms and legs? Worse anytime of day? What do you take for the pain? Just wondering.....thanks!
the pain in my legs feels like bone crushing, the pain in my arms only begins after my legs. It is almost like my legs are like I can't take anymore and it goes to my arms. The pain I have is from knees to ankles and elbows to wrists. When I get the pain in my arms it always starts with cold elbows and then it always take 4 -5 times longer to go away than in my legs. Currently I take 8mg requip for one month then I take mirapex for one month. I also take a low does of Klonopin at bedtime.
the pain in both my arms and legs feels like bone pain, the pain is from my elbows/knees to my wrists/ankles at no particular time of day. I actually see an acupuncturist and he feels that in chinese medicine I have a blood deficiency, hence the pain so deep rooted. botn my neurologists were very interested in the blood deficiency aspect. both my neurologist and psychiatrist also belive I have dopamine deficiency resulting in me hitting the ceiling very quickly on my meds. my body just metabolizes every new increase in about 2 weeks. My neurologist informed me I have very severe rls that of someone who is about 85 years old (i am only 42) I take requip, mirapex, cymbalta, vicadin and they dont take away all my pain.
I don't trust doctors and I think that RLS should be in different categories with different types (e.g., like types of headaches -- migraine, tension, etc.). Some will complain that they're suffering from RLS and have pain, and some will tell you that there is no pain but a uneasy, creepy-crawly feeling without pain. I suffer with RLS and would rather have pain than to deal with the uneasiness that I suffer with. As a matter of fact...I would usually poke myself or slap my limbs to the point where it hurts to get my mind of the uneasiness of the creepy-crawly feeling. IMHO, prescribing the same medication for someone who is suffering with the pain type of RLS to a person suffering with the uneasy, painless, creepy-crawly RLS, probably would not work. Requip and Vicodin which has opiods would only work for those suffering from the painless, creepy-crawly type RLS. It's sad that SO many doctors misdiagnose their patients, especially those who suffer from RLS. I have been to SO many doctors and they're usually stumped when I describe the symptoms I have from RLS. Moreover...I'm the one who usually has to tell them that it's RLS.
The symptoms may not actually be RLS, but the leg pain I eventually suffered had me going insane without sleep. I started introvenus iron from a hemotologist and my symptoms which were severe, went away with the second treatment. My iron was so low, that I was getting introvenous iron twice a week. Those with RLS symptoms might want to get a complete blood test done.