Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Thinking of cutting my legs off.... RLS whine

This will sound crazy, but a friend of Marsha's wrote her a while ago with this:

I was talking to my doctor about "restless legs." He had a solution. Told me I'd probably lose all respect for him, but he said it really worked. Even asked his nurse in to tell me. He said, "Angie--how did you get rid of your restless legs at nite?" She said, "Oh, well, you put a bar of soap in between the bottom sheet and the bed pad--down by your feet. Just make sure it's either Ivory soap or Dial. It really works." He said he thought there was something in the soap like lye that did something....Anyway, I don't get it all the time, but since I did this, I have not had it. Go figure

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Might be worth a try! I'm pretty sure you couldn't hurt yourself with a bar of soap!

Yesterday I was watching Oprah and Dr Oz was on. Guess what he was talking about? RLS!

He says it is a lack of Calcium and Magnesium. Maybe you could do trial and error. Start off slowly and then increase. Also Trudi said it could be Magnesium and Potasium. Definitely worth a try vrs those strong meds. It could take a while till you get the amounts correct, so be patient. I also wonder if taking them at bedtime would be more effective.

Thanks for asking about Danny. Yes he is still doing NS/ND. It will be 6 months on the 23rd, but who's counting! He is feeling good. Still is stiff, has pain from time to time, but all in all,better. He went on vacation to California and found it was difficult to stay on the diet. When he returned home, he was complaining that his back was KILLING him. So there really is sometihing to this diet. He got right back into it and is functioning again. He is still healing from pilonidal cyst surgery. It takes about 12 weeks to completely heal and was quite unpleasant, to say the least. I am also wondering whether having an infection in the boday creates more pain for AS.

I hope you can find an answer to your pain.

Laurie

My doc thought it was originally RLS also but I had it all day long not really at night unless it was just continuing from the day. It's a pain that very hard to describe, sometimes a twitchy itchy feeling sometimes it really kicks in. Sometimes its a very deep pain like at the bone then other times it just annoying crawly feeling. Sometimes it only goes to my knees and other times it goes from my sit bones right to my toes. Sounds alot like rls doesnt it? My rheumy gave me stretches to do which I used to do when I ran and it helps alittle. You lay on your back and bring both legs up and cross one over at the knee so it looks like the number 4 and SLOWLY pull back and he told me to SLOWLY roll from side to side from my waist and then I can really feel it. But my pain is in the backs of my thighs not the front so that may not help you. This like everything else with AS is somethimes it is this way sometimes not. You know it cant be easy...


Angie

Nice thought wish I could do that to releave mine
I cant even lay on floor LOL LOL

Definitely a mystery for sure. Keep us posted. Hope it works out. You are definitely too young for this!!!!!!!

Reading this, and then about the Cha Gunn technique in the Alternative section made me think of an exercise that a trainer at the gym had me doing. With walking unevenly as a result of inflammed joints on alternating sides of my body, as well as muscle weakness in my legs, my iliotibial band had was tight.
http://en.wikipedia.org/wiki/Iliotibial_Band_Syndrome

I got a foam sausage that you lie on and roll your thigh up and down on to stretch it. Hurts, a *lot*, but does help in releasing it. Just a thought, but it might be something else to talk to a PT with if you see one. Along with exploring the sciatic nerve aspect.
Hope you're hanging in there!

Sorry Megan, I don't know if my advice will help you. I have RLS problems, and my doctors assistant told me to eat bananas and drink Gatorade. This is because the electrolytes are low. If I eat a banana every day I don't have a problem with RLS. If I miss my banana for a couple of days then the legs will be going crazy at night. My neurologist told me that will not work, and gave me a mirapex starter pack. I took it for a couple of nights, but then went back to the bananas, because it does work for me. I don't know if this will work for you, but I think my RLS is caused from my electrolytes being low ( this may happen from long distance runs).

Hey Megan, yah, I know the RLS leg pain. I'm on 20mg Amitriptylene (never can remember how to spell that). It helps me sleep, but since I'm asleep, I'm only guessing that it helps with pain. I find that especially when I'm super tired, my lower legs ache something fierce. It's right through into the bone marrow, I swear. One thing that can help is sitting on the couch with my legs elevated as if they were swollen, supported by a nice soft pillow. I often fall asleep with my legs crossed tightly together. Not sure why, but it's comforting. Ice paks can help as well, sometimes. NSAIDS aren't much help with this, by the way, not for me anyway.

And I find that the jiggling leg thing gets worse the closer I get to my next infusion. My sweetie noticed that, actually. If I'm wrung out, I'll often sit on the couch under a blanket (because I'm always freakin' cold in the evening), the soles of my feet on the edge of the coffee table, my shins held tightly together, but here's the part my sweetie thinks is adorable ... my feet begin to intertwine, so my toes are clasping each other, so tightly they get all curled up. It's hard to describe, really. But that sort of says it.

That RLS leg pain really is awful. I feel almost desperate when it happens. Like I'm going to scream or burst into tears any second. My dance classes help alot, because I'm using my legs, moving around/walking seems to ease it. But I have to be careful, because I'm apt to over do and then the rest of me complains. It's a truly vicious cycle.

Anyway, my dear, I am sorry you're going through this ontop of everything else. Wish I could make it stop for you.

Warm hugs,

It is really a bummer that we have this thing no one truly understands.. and if you don't have it, you really have no idea what it feels like.. Um, the requip only took a day or two to really work, I can feel it kick in about an hour after I take it, I am on 2 mg of requip at night.. and just this last week got put on gabapentin for my as pain, and Ive seen it helps with rls also.. so I guess a double dose for me Lol..
I have tried mirapex and it just wore off too fast..I have a very good dr who always wants to get to the bottom of things for me, so she is amazing!
Anything I can do to help, I will sure try hun..
Hugs and a great nights sleep wishes for you!

Sugar

Yanno, Ive seen that soap thing somewhere before, On an RLS website...hmmmm maybe there is something to it..

couldnt hurt