I am new to the rsd in my legs and am trying to figure out how best to get along. I know with my arms i have compression bandages that initially hurt like heck but have decreased the hypersensitivity to my arms...unfortunately they don't go over my hands so those are hypersensitive. I know usually we try to wear loose clothing because it hurts but the compression bandages for my arms keeps some of the swelling down and help with the hypersensitivity.
As to my legs....I have been waking up and they are so still that it hurts to move...is this normal with rsd? It takes me awhile to get out of bed....any ideas as to if I should elevate my legs at night? Once I had my legs bent up when I fell asleep on the couch and it took 10 min. to get it straight again. So, I have some ted hose, it is like the compression bandages for my arms....should I start wearing them? Any of you with rsd in your legs give me the down low on what you do. I am still working out what to do with the arms but I think that the legs are a whole new ball game.
Lots of positive thoughts out to you all....hope you are having low pain days!
Jennelle

Hi Jennelle,

I have RSD and Dystonia in my left leg as well as both arms. I also have the stiffness that you mentioned and it can take me about 15 minutes to try and get out of bed in a morning sometimes because of it. It sort of feels as though my leg tightens up whilst I am asleep. I think it is worse also because I have Dystonia so can't physically move my foot and leg to try and move. I am always using my right leg to try and get up which of course, is making that leg pretty painful also!!

I can't tolerate the compression bandages at all as they make the pain so much worse because of the hypersenstivity. We did speak to my Doctor about using compression bandages whilst I was asleep though and he said that you should never wear them for bed and should only really use them during the day.

I have a hard time keeping my leg under the blankets on a night due to the hypersenstivity although I do try and keep it under as much as possible. I used to have a pillow that I put my leg on to try and elevate it. It was a pillow with like a 'hump' in it in the middle to try and relieve some of the swelling that my PT's suggested might be useful. It did help with the swelling and stiffness a bit but didn't get rid of it that much.

Here is a link to a picture of a pillow similar to the one that I had for my leg that might be worth looking into...

http://www.stacksandstacks.com/image...reg-118308.jpg

My PM Doctor and PT's told me that to try and reduce some of the swelling, I had to try and elevate my leg as much as possible (above the heart) whilst laid or sat down and also keep moving my knee and walk as much as possible. It did hurt a LOT but it does help a little bit sometimes.

I'm sorry that you are dealing with this and that I can't give you that many answers. Just know that I care about you and am here if you ever need to talk to someone!!

Alison.

Since I don't have bad swelling I can't help much. I can say the stiffness is absolutely normal. When we're in bed all night and not moving makes joints stiff. I've gotten used to it so don't think much about it anymore. I lucky I can take my meds and stay in bed for an hour till everything kicks in and my joints unfreeze. I'd love to go back to that stupid ime doc they sent me to and ask the jerk if my joints are stiff enough now! LOLOL

I'm sorry you're now dealing with it in all 4. I got to that point in 11 months. I'm always here for you anytime.

Hugs,

Karen

Jennelle

im sorry that so much is goin on !!

i get stiff like that even just sitting for awhile..
about bed time tho i try to lay with a body pillow between my legs and up around my chest. i am short tho only 4'10 and i dont know if those big ones will fit others like me LOL i also try to lay on my side i cant sleep well on my back or right side because of my pump

but this is normal. i know that it sucks. i also dont know much about swelling that is the only thing that i dont have.. i get tiny bits here and there but nothing like alot of others gets. i hope that this helps

carrie

Hi Jenelle....
(I have RSD in my tummy and legs)
Carrie gave you some great suggestions on the stiffness part.
I too sleep with a body pillow.

Swelling-- my legs are far worse in the heat (vs cold) and, ironically the only thing that has really helped is walking. Lots and Lots of walking. I found that out when I lived overseas, didn't have a car and had to walk everywhere. Makes the pain worse, so it is kind of a catch 22, but.....

As for the hypersensitivity -- I have Sensory Processing Disorder, with severe tactile defensiveness, not really related so much to the RSD, but ALL my limbs/body are hypersentive to touch/fabrics, etc. I was in Occupational Therapy for 10 months for SPD and my OT gave me some great techniques to help with that. There is a special brushing program you can be taught to do, by a certified Occupational Therapist so Occupational Therapy might be something to consider.

Hang in there !

L2L

I am not sure about this and for me it would be a huge no. I can hardly have different socks on from being so sensitive. I also have heard having the rsd limb so controlled is not good. I am not sure if this would be with the hose but I would think it would restrict some moveme. I am so stiff too and cramping. Like I have no circulation. That is why I have started klonopin to relax. I think you stated you were on that but maybe another form of muscle relaxer. I don't elevate my legs and just accept that first thing I will be stiff but right when I get out of bed I try to walk around slowly.

Jennelle,

Whatever you do, don't use compression bandages or ted hose.

What does your doctor say about this? I have never seen a doctor prescribe this kind of "treatment" for RSD.

This has me worried.

i have rsd in my right leg and foot.. i have been waiting for someone to ask the same question because i have the same problem. what i do is i prop my foot and leg up on a pillow one of those memory form ones, they are soft , and use that. i can not put any sheets or blankets on my leg or foot it hurts to bad. when i get up in the morning i am so stiff that my knees wont even bend.. it is really hard for me to walk until i take my meds. i hope that the ted hose works for you...
let me know it might something i can try, take care michelle

you are all great. I wear compression bandages on both my arms now and the only part that it hypersensitive is where the bandages don't cover. They are like using constant desensitization as they are not too tight but slowly move over my skin through out the day...I think the key might be to use them as soon as you know it is rsd and everything hasn't gotten so out of control. I think I will try it...I talk to my ot about it (the one who gives me the one's for my arms) and someone else said it worked for them so it is worth a try. I guess I take mine off for night anyway so I won't wear them then...what can it hurt...besides giving me more pain. I will let you all know how it goes and thanks for the input!
lots of love,
Jennelle

i have noticed that nothing really makes my stiffness better or worse but i try to make as less as i can with the body pillows and things like that..

i hope that you get some relief soon

carrie