Am alone here or is there someone else also?

crazylegs14 · Post by **crazylegs14** » Wed Jul 16, 2014 2:47 am

Hi, I recently got diagnosed with having rls this month, and i suspect that I have been having this problem for over 10 years and never noticed up until recently where my legs have become uncontrollably painful. My rls is kind of different from what i have been reading so far, I rub the soles the feet on the calf of both of my legs every night and therefore I have a bruise on both of my calves that has only gotten a deeper purple color from my unconscious habit. does anyone else possibly do this, and if so what kind of treatment plan has the doctor recommended for you. so far the doc has given me requip, of which only makes me drowsy all day, and I don't like feeling this way. I also tried compression stockings, and exercising and this is making my legs very achy and still is not really solving my problem thus far. any suggestions would be great as to what recourse you think i could try next short of me vising a supposed rls specialist in my hometown of the windy city.

JustKeepWalking82 · Post by **JustKeepWalking82** » Wed Jul 16, 2014 3:54 am

I rub the soles of my feet on my calves sometimes, too. I just saw my new primary care doc who is actually specialized in internal medicine. I augmented on the first dose of Requip, so I unfortunately don't have much experience with it for long term. What dose are you currently on for the Requip? Have you had your ferritin level checked? Labs say 10 or 20 is normal but for us with WED it needs to be up toward 100 in order to have a better chance at using a DA like Requip without augmenting and the increase in ferritin levels has been known to reduce and sometimes even eliminate WED symptoms. ViewsAskew, or Ann, is one of the moderators on this site and is a wonderful person who lives in Chicago like you. She would probably be able to help more with finding a doctor close by. I am on this site all the time so feel free to contact me at anytime day or night. Like a lot of us on here, I don't sleep much.

crazylegs14 · Post by **crazylegs14** » Wed Jul 16, 2014 4:14 am

so far with requip im taking on 1 tab a day and the doctor told me to take 2 hence she wrote my prescription for three times a day. Im going to another doctor because obviously that one didnt know what the hell to even prescribe me. i asked the doc about the wand device or neupro and she only told me to ask my neurologist about that possibility, these responses annoyed me so i decided to go to another doc tomorrow at north shore in hopes they can tell me something different. im a walking zombie with painful calves that are swollen and no one understands my pains quite like me despite doctors viewing the bruises and swollen calves that are clearly visible.

JustKeepWalking82 · Post by **JustKeepWalking82** » Wed Jul 16, 2014 7:01 am

Do you know what the strength of the Requip is or what the level of your ferritin level is? Unfortunately for me and a lot of others here, finding a doctor who understands WED is not easy. For some it takes years. Some of us have to teach our doctors about the disease and how to treat it, but you have to be careful because they might think that you are trying to play the doctor and then become upset with you and not the other way around. If your doctor doesn't take the time to understand or have the compassion don't keep them. My neurologist basically just let me go a couple of weeks ago but thankfully my Primary Care doc is up to date on WED stuff and is a caring guy. It also helps that I have an appointment with a WED/RLS specialist who also has RLS (Dr. David Rye- whoohoo!)

It would also help to get the book called Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen, and Henning. It is very informational for not only the sufferers but also helpful to the doctor that you have if he/she is willing to learn about the disease. You can get it from Amazon, and most major bookstores like Barnes & Noble. All of us here on this site are here for you.

Post by **ViewsAskew** » Wed Jul 16, 2014 9:39 am

I'm not sure it's WED/RLS. It could be, but the bruising and swelling are not at all consistent with it.

Some questions:
does walking or moving make it better? Not for long, but do they feel better when you move? Or is rubbing the only way to resolve it?
do you feel anxious as if you MUST move your feet or legs? A strong URGE to move?
is it better in the day time than at night?
do you have symptoms all day and night?
how long have you had it and how severe is it - such as at night for a few minutes, at night for a few hours, in the afternoon and night, all day?
by Windy City, do you mean Chicago? I'm from there and haven't found a good specialist yet. I fly to California! I'd like to hear who you'd be coming to see.

If you do not have symptoms during the day or they are not bad, there is NO reason to take ropinerole during the day!

Sorry for the barrage of questions. Marisa had some great things to say, too.

crazylegs14 · Post by **crazylegs14** » Thu Jul 17, 2014 12:41 am

0.5 mg is what i take 2 times per day so far, and as i stated I am a walking zombie with fighting back the urge to take a nap and I dont like this feeling. the urge to move my legs happen when i am asleep and as i stated in my post, I rub the soles of my feet on my calves everynight and as a result i have bruised calves that are swollen on the areas where i think that I rub the most. I do live in chicago and am just trying to figure out what i can do about my swollen calves. I wore some compression stockings and they absolutely make my legs hurt worse so these are not an option for me to continue to use right now. I have no idea how long i do it in my sleep, however i see the damage in the morning when my legs feel like jello upon walking on them. (Marisa)

Just keep walking I have no idea what my ferritin level is, because i just went to a doctor who prescribed requip to me this past friday, and im ready to toss those pills in the garbage however im trying to be open minded to see if they can help me at all with this uncontrollable habit at night. I am not trying to be the doctor, however with some of the doctors that I have encountered so far (2) they seem to both ignore that i told them my calves hurt and are swollen and this has annoyed me, because im popping aleve, tylenol and any other pain medication i can take that will give me some relief.

Post by **ViewsAskew** » Thu Jul 17, 2014 3:34 am

OK - since it's ONLY at night, you do NOT need to take them during the day. In fact, it is likely more problematic if you do.

Try a .25 mg tablet 60-90 minutes before bed and see what happens.

Go to yoru family doc and ask for a serum ferritin test. There is a brochure you can download on the WED Foundation's website that you can take to the doctor. Tell him/her that you were diagnosed with this disease and a ferritin test (and a hemoglobin one) is recommended.

When you go to the doctor, it might help if you focus on the icky sensations that make you rub your calves. Not sure, but that might help. But, I've not found any good doctors here, yet. I wish I had.

If you don't mind asking, who did you go see?

crazylegs14 · Post by **crazylegs14** » Thu Jul 17, 2014 5:19 am

I went to advocate clinic in evergreen park and the other advocate clinic on 103rd st. I am not looking forward to going back there and am looking for a new medical group that can help. I am going to try north shore hospital since they have a rls specialist and also i hope they will give me a sleep study so they can determine when i actually do my nightly legs dance.

Post by **Polar Bear** » Thu Jul 17, 2014 2:12 pm

crazylegs - I note that you started on Reguip .5mg twice daily and there is no indication that you titrated up to this dose.
ViewsAskew has mentioned the dose of .25mg....

I don't think anyone should have started off with a total daily dose of 1mg which at present is now considered by the experts in this field to be the max daily dose.
Make sure you get the Ferritin level test results figures - don't accept that you are 'normal'.
Also, the book mentioned is excellent, if you get it make sure you order the Second Edition.

crazylegs14 · Post by **crazylegs14** » Thu Jul 17, 2014 3:36 pm

@polar bear i think the doctor that gave me that was unsure of what to do with me really, because as i stated in an earlier post i was prescribed three times a day (90) pills yet she told me to take them two times per day. I didnt listen to the advice of the other person who stated i should take them .25(5) tabs per day because i feel like a zombie and im sure i would most certainly be asleep throughout the day and night. so im no listening to that advice. What I am going to do is some search for a doctor that takes my insurance that is a specialist for rls. I will also get the book that you mentioned to see if that will help me any. Thanks for your help!

Post by **Polar Bear** » Thu Jul 17, 2014 4:39 pm

The book is available on Amazon and is an excellent method of educating yourself, and your doctor.
Make sure it is the second edition.
At an appointment you are able to refer to and show (already marked) information.
It's a bonus if a GP is willing to admit he/she doesn't know it all and will learn with you

Also, note that within the Discussion Board there is a list of Doctors who state they 'specialize in RLS'.
Please be aware that we have no way of knowing how well versed any of these doctors are/or are not, in their treatment of WED/RLS.
Apart, that is, for the few real real real experts that we would all love to go to.

Post by **ViewsAskew** » Fri Jul 18, 2014 4:04 am

I saw two different sleep doctors at North Shore. They were both OK. I would trust them with your situation. They wouldn't do what the last doctor did.

crazylegs14 · Post by **crazylegs14** » Fri Jul 18, 2014 7:23 am

@viewaskew would you recommend them to anyone to go see them? or were they just mediocre because i dont live near the hospitals for north shore, and want to know before i get disappointed by yet another doctor if you dont mind elaborating.

Post by **ViewsAskew** » Fri Jul 18, 2014 8:57 am

crazylegs14 wrote:@viewaskew would you recommend them to anyone to go see them? or were they just mediocre because i dont live near the hospitals for north shore, and want to know before i get disappointed by yet another doctor if you dont mind elaborating.

I hear you - I've been through about 15 doctors. Of the ones I've seen here, they were the best. They are not as versed in really difficult cases as I needed. They were very tentative about using opioids for WED/RLS, which is the only thing I can use. That really freaked them out. I also didn't feel they were as educated about severe or refractory WED, which is what I have. It's WED that cannot be treated by common, regular methods.

But, I definitely got the sense that they did understood the basics.

Of the three doctors there, I only worked with two.

Dr Shives is very direct. She is empathetic. I didn't have many difficulties with her - I came from a well-known specialist (Dr Buchfurher in California) and she talked to him and agreed to treat me as he did.

The I saw Dr Trosman. She took over for me when Dr Shives took a leave of absence. She wasn't comfortable using the opioids at all. She didn't want to follow Dr B's advice. She wanted me to prove - again - that it was RLS/WED and not something else. She hadn't had cases like mine when people have symptoms all day, all night. She thought I must have some other disease or issue, too. But, I do not. I've had this since I was a kid - I know what it feels like. I've had other issues, too, and can tell the difference. I balked - I wasn't going through more tests to prove it.

I get her perspective. Opioids are getting harder and harder to get. She needed to feel comfortable and she didn't. I wasn't going to go through what she needed me to do.

I am likely a hard patient to have. I know as much as many doctors - more than some - about WED and its treatment. She wasn't comfortable with someone like me. She's more traditional - a doctor who is in charge. She didn't seem to like collaborating with me. And, I'm do not work with people who won't listen to what I think IF I know something. That's fine if I don't, but I've been reading research and books for over ten years on this topic and have likely read more research than they have.

I do not know Dr Kennealy, but she gets good reviews at multiple sites. She's an internist, too. I think she'd be a good choice. Maybe you could call and talk to a nurse and ask the nurse some questions. You could explain your situation and ask the nurse which doctor she thinks would be best. Or ask about the each doctors style and how satisfied their patients are. Nurses often know a LOT and will share information if you ask nicely.

crazylegs14 · Post by **crazylegs14** » Fri Jul 18, 2014 6:46 pm

So far the 2 doctors are not listening to me, i told them of my troubles and they seem to just ignore what i am saying thus far, but I am hopeful the next doctor that i visit will listen to all my questions and concerns and understand what I am saying rather than let things fly over their head when i have visible problems.

Restless Legs Syndrome (RLS) Discussion Board

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