Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-25-2009, 10:15 PM #21
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Carrie,

My Physical therapist has had extensive training in Cranio Sacral therapy.. Check your local Physical Therapists..Here is a link to find a practitioner in your area.. Your therapist should be trained by the Upledger Institute..

http://www.upledger.com/

Best wishes,

Pauliana
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Old 02-25-2009, 10:45 PM #22
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Quote:
Originally Posted by Debby View Post
Can anyone enlighten me as to why my post was removed??? I posted about the only type of sock I could stand to wear.

DebbyV
Hi Debby,
I don't remember ever reading your post and I looked back in my email records and didn't find your response there either. Perhaps try to inquire to one of the moderators about what may have happened or just repost. Good socks seem to be a HUGE need for most of us. I, for one, would welcome your input. Thanks!! Take care!!
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Old 02-26-2009, 07:19 AM #23
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I just thought of another "RSD Life-Saver"! I LOVE Crocs and my Ugg Boots!!! They are the only shoes that I can stand to wear because of how sensitive my foot is!!

Before I got RSD, I thought the Crocs were sooo ugly and I would never be seen in them but they are really comfortable and I have realised that with RSD, comfort HAS to come first before fashion!!!!

I love my Ugg Boots also. I have a pair in brown and black and plan on getting some more when we go to Vegas as I have heard they are a lot cheaper there than they are in the UK. The Ugg's are sooo comfortable and really soft as they are made from sheepskin. It's a bit of a nightmare trying to get them off and on because my RSD leg is rotated out to the side but other than that, I love them!!!

I can only stand to wear shoes for about 2-3 hours at the most because of the hypersensitivity and I CAN'T wear pumps or anything else like that as they are too painful for me so the Uggs and Crocs have been really good for me!!!!
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Old 02-26-2009, 01:49 PM #24
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Ali and all,
I cannot remember......do you have the pain sensations on the bottoms of your feet as well??? I am in SO much pain trying to walk even in 1 inch thick cushy slippers....I cannot bear to put any weight on my soles. The bottoms of my feet hurt to touch, but INTENSELY so to bear weight on them. I really am desperate to find some shoes I can wear outside for when I must go out......We tried buying me the shoe inserts to add cushion but those just made my shoes tighter and they don't work for me. I am willing to try about anything at this point.

How do you all deal with the bottoms of your feet hurting??? Do you still force yourself to walk through the pain?? My instinct is to get OFF my feet when they hurt this badly, but they still hurt regardless, though not as badly. I am trying so hard to stay mobile......I am getting to the point where I cannot bear the pain to do so. The last injections I had on Monday seem to have made me WORSE.

My RSD has definitely spread to my palms as well......they are scorching hot to touch always and red. They constantly feel like they're burning......It is so hard to get comfortable to sleep. I keep trying to put them palm down on the cold sheets to soothe them.....it is kind of awkward to sleep that way and I'm always in search for a new cold spot!!

Any "lifesavers" for the above mentioned would be SO appreciated!! Thanks all!!
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Old 02-26-2009, 02:26 PM #25
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Dr. Scholls makes wonderful diabetic socks that are super soft & have grips on the bottom so u dont slip. You can find them at Walmart. If I can even wear socks I usually wear these or at least some type of diabetic sock because they are not as tight as regular socks.
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Old 02-26-2009, 03:26 PM #26
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Hi MomInPain,

I also get the really sharp sensations in the bottom of my foot. It feels as though I have really severe pins and needles and I get a shooting pain that shoots right down from my hip into my foot. It is SO painful and literally cripples me and brings tears to my eyes for a few minutes. I spoke to my Pain Management Doctor about it and he said it was a VERY common symptom of RSD and it is caused by the nerves misfiring - which I guess makes sense as it feels to me as though there is electric running through my leg!!!

I haven't found anything that helps with this pain so far. No matter how much I try and coushion my foot, it doesn't help and the pain is always there. Soft fabrics like slippers seem to help a little but not that much and I tend to fall a lot in slippers as there isn't enough support in them due to my foot being so rotated to the side and unstable.

I try and force myself to walk through the pain as much as possible. It is extremely difficult and REALLY painful but my PT's and Doctor said that I need to try and keep walking as much as possible, despite the pain. I spent 13 months in a wheelchair and I was SO depressed and there is no way I want to go back there so I try and work through the pain as much as possible ... it is bad enough using wheelchairs and crutches for long distances so there is no way I want to end up in that situation again!!!!

My PT's told me to keep walking as much as possible but to pace myself and not overdo it too much. There is a fine line between doing too much and too little and it's really hard trying to find the right balance. My Doctor is always telling me that to hurt is not to harm but it is easier said than done sometimes and he doesn't understand just how bad the pain is lol!!

Are you on any muscle relaxants?? They can be really good for some people as they can stop the cramping and shooting pains. I have been on LOTS of muscle relaxants and non have worked for me but everyone is different! I've heard somewhere that Lyrica is really useful for the shooting pains also so that might be something worth looking into if you haven't tried it already.

I understand what you mean about finding it really difficult trying to get comfortable in bed. I am forever tossing and turning and wake up often throughout the night due to pain etc. I can't sleep with my leg under the duvet that much so it makes it really hard to get to sleep and now that the RSD might be in both arms, it is even more impossible to get comfortable!! I used to always lay on my left side as that was where I didn't have any pain in my arm but now I have pain in both arms, I am having to try and "learn" to lay on my back which is really difficult!!

I really hope you start feeling better soon - I wish I could help you but I know I can't unfortunately, just know that we are all here for you and DO understand what you are going through!! Please feel free to PM me if you have any questions or just want someone to talk to!
Quote:
Originally Posted by MominPainRSD View Post
Ali and all,
I cannot remember......do you have the pain sensations on the bottoms of your feet as well??? I am in SO much pain trying to walk even in 1 inch thick cushy slippers....I cannot bear to put any weight on my soles. The bottoms of my feet hurt to touch, but INTENSELY so to bear weight on them. I really am desperate to find some shoes I can wear outside for when I must go out......We tried buying me the shoe inserts to add cushion but those just made my shoes tighter and they don't work for me. I am willing to try about anything at this point.

How do you all deal with the bottoms of your feet hurting??? Do you still force yourself to walk through the pain?? My instinct is to get OFF my feet when they hurt this badly, but they still hurt regardless, though not as badly. I am trying so hard to stay mobile......I am getting to the point where I cannot bear the pain to do so. The last injections I had on Monday seem to have made me WORSE.

My RSD has definitely spread to my palms as well......they are scorching hot to touch always and red. They constantly feel like they're burning......It is so hard to get comfortable to sleep. I keep trying to put them palm down on the cold sheets to soothe them.....it is kind of awkward to sleep that way and I'm always in search for a new cold spot!!

Any "lifesavers" for the above mentioned would be SO appreciated!! Thanks all!!
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Old 02-26-2009, 03:53 PM #27
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Default try this

try rubbing different types of things over the spot that hurts not hard,get some one to help you because they cant fell it so they will do it harder than you try this for about a week I'm new to this only had RSD for 3 mouths I started rubbing a dry wash cloth around on it and noe I can ware a bra<its on my shoulder,due to surgery, I know its hard but do it,if you like the clothing you have now and dont want to buy more,this is the way to go.Let me know how it goes for you.
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Old 02-26-2009, 04:31 PM #28
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Thanks so much Ali!! Yes.....this is a TERRIBLE pain day. It is my 10th wedding anniversary, too!! I don't even feel like celebrating . I am on Zanaflex in the evening.....it was making me SO sleepy to take it twice a day that I cut it back to once, but I may increase it anyway to try to get through this flare. I'd rather be asleep than awake and in this much pain.

They took me off of Lyrica and put me on Cymbalta. It seemed to be working GREAT until my injections on Monday. Now I am worse than ever, and I'm on the maximum dose. I hope this is just due to the weather change (it's raining) and that I wil feel better soon. This is as bad as my pain has gotten so far. The pain pills aren't even working......barely taking the edge off.

You are so right.....it is hard to find the balance between too much and not enough. Some of my pain is delayed......I don't know until it's too late that I've overdone it. I am determined to stay as mobile as I can be. I have four kids.....too much to do to give up!!

Thanks so much for writing. You are such a sweetie and we are all so blessed to have you in our group!!! Are you in Vegas yet??? Weren't you supposed to travel yesterday??? If so, how did it go???? If I lived anywhere near there, I would drive over just to meet you!! Take care of yourself and keep us posted on your trip!!
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Old 02-26-2009, 06:41 PM #29
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Ali, Well I did use a newer version of netscape so who knows what happened to the original post. It just disappeared is all.

I wear only Chenille socks. Not the ones people wear for sock slippers. I am talking about socks made out of chenille. They are so soft & you can't feel the seam across the toes at all, I had to look really hard to see if there was one even there. You can't feel any threads at all & every other type of sock I tried I could feel each row of woven thread. Even after this many years, since fall '03, I still can't stand any other type of sock on my feet. Took me forever to be able to desensitize them enough to put anything on them but I did. A GF from the old neruro talk forum told me about them & her daughter doesn't live that far from me bought me my first pair. You can get them at Kohls late fall to early winter. It is the only place wear I have ever found them except once at WalMart in the spring & they were short, like what one would wear in the summer with tennies. I am due to buy new ones this fall & just hope the ones I have make it thru the rest of winter. *LOL*

I also use soft leg warmers on my ankles over my socks in the winter to keep them extra warm. I buy them online as I can't find them anywhere else. The place I get them is really good about exchanging them if the come apart after a couple of washings. I had that happen last fall with one pair. I have been known to also wear them in the summer even in 100 dg weather as now I have a hard time keeping my ankles from getting cold.
This web site also sells arm warmers & several of their leg warmers can be used as arm warmers also. I don't know if I can post the web site here but if you go to google & type in leg warmers a site will pop up in the list titled "Sock Dreams - Leg Warmers" & that is where I buy mine thru. For the most part they are not really expensive. I have one pair that I have had since hmmmmmmmm '05 or '06 & I just love them the most.

The slippers I like the best I get from Carol Wright. I buy mens leather lined slippers (they look like moccasins). The lining looks like sheepskin, but isn't, but they are very soft on my feet. I wear them year round. And they are cheap. $5.99 for one pair & any you buy after are $4.99 as long as it is all in the same size & the same order. My hubby doesn't have RSD but he does have diabetes & he loves these slippers too So we always order several pair at a time & luckily for us we wear the same size now, he has small feet for a guy, & I had large feet for a woman even before RSD hit them. The toes because of the plush lining are always a bit sng at first so I stuff them with dry washcloths to mush down the lining. *LOL* They do have the same type of slipper for women too but they are not wide enough for me.

Other than that I don't have a problem with clothing. Like I said, I did alot of desensitization before I could stand to put much of anything on my feet. I had to have something hold the sheets up off my feet & toes when RSD first hit bercause I could not stand to have anything touch them at all.

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Old 02-26-2009, 08:48 PM #30
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Default desensitization kits

I just remembered when I was in the hospital in Germany they sent an therapist to me who specialized in desisitization. She brought a whole kit filled with simple household things for me to try to help desensitize my foot. It had things like a silk scarf, feathers, soft bristel paint brushes, a bath exfoliation glove, a soft cotton bag filled with heated cherry pits...etc. I still use a number of these tricks when my sensitivity increases and thought it might help some you with hightened sensitivity.

I also don't like breezes, even worse I feel like I need to dress like an eskimo in the middle of the summer when I go grocery shopping. I hate the freezer section.

Wishing you all a pain free day.

MsL
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