can't quit figure out what is going on with them.

I have a pair of curves sandels now and also a pair of New Balance shoes. Neither is doing the job.

I started having trouble awhile back. I can't remember when but it's been at least 2 months. After I have been on them in the day time for any length of time when I get out of bed to go to the restroom I can't walk on them.

I have the burning going on. I tried to lay my right foot on my left one and I had to move it because of the burning.

I know I have the RSD in my right foot up to me knee and I know what that feels like when it gets going.

Along with the burning my feet are cold and I also have what I describe as electrical shocks going through my legs and feet. My legs are also cold at times.

This thing with my feet though has me worried. I don't know what is going on with them. Any ideals would help.

The walking thing is bad. I have to stay off of concrete and blacktop. All of the stores seem to have concrete floors so that is hard to do.

My Dr. told me that I have to keep positive and keep my mind on the thought that I have to keep going and not think negative. Kind of hard to do when it's an everyday thing.

I don't have any ideal if it's the RSD, Fibro or MS doing it's thing but we can't seem to get it to calm down.

Tonight has been hard on me for some reason. Some nights I can't get my mind off of Bill and this is one of them.

Any help would be appreciated.

Ada

Hi Ada,

Even though your painful feet are are symptom of RSD it can also be a symptom of Plantar Fascitis which is quite a common problem for those who spend a lot of time on their feet.
I am sure there are many here who will have had it and recall the awful burning in the soles of the feet making you shift balance from side to side. It is often worse when standing and trying to walk after a period of being seated and this does sound similar to what you describe.
This is often treated with anti-inflammatories, steroids and orthotics.
It might be an idea to see if the burning in the soles of your feet might be something that can be treated quite simply---unlike RSD.
Regards
Tayla

I actually thought about that myself. I read up on it. I was reading about different problems about feet and found that.

When I go in to see my Dr. we have so much to deal with that I get side tracked and don't talk about this. I talked to him on the phone and told him I was still having problems walking. When I see him again I will see what he says.

Last week he turned my VNS up and that's still not doing what it should. I finally made an appt. to see my hand surgeon on the 16th to discuss surgery with him. My middle finger is still swollen and I have a lump near the palm of my hand so I know it's time for triggerfinger surgery.

I will make a list this time and take it with me when I go in. I am so tired of not being able to walk.

Will the meds stop it completely?

I appreciate all you do to help me. I realize you are a very smart person. You know I have a nurse that is also my friend and I always was in awe of her because I would go in to see my PCP and she would tell me what was wrong with me before he got in the room.

I will say though all nurses aren't like that. My other nurse doesn't even know how to do blood pressure or weight and has no ideal what RSD or anything else is for that matter.

Thanks again,
Ada

I will say though all nurses aren't like that. My other nurse doesn't even know how to do blood pressure or weight and has no ideal what RSD or anything else is for that matter.

Thanks again,
Ada[/QUOTE]

Ada,

Nurses are like any other profession where you will get both ends of the spectrum when it comes to knowledge and care BUT if you had a nurse who doesn't know how to do a BP or weigh you then she has NO business calling herself a nurse and I would report her to the Nurses Board. Sorry you had to endure her incompetence
As for not knowing about RSD, it really does depend on what field of nursing or medicine someone has practiced in, a decade ago before I developed RSD, I had never come across it either.
This is the reason we must avail ourselves to specialists in our field---I would never allow an orthopaedic surgeon to take my tonsils out
Cheers
Tayla

This nurse has been my nurse for over 16 years. She is also my friend. They both are.

About 4 years ago she went through cancer and almost died on the table from a lousy Dr.. She had to wear a colosotomy bag for over a year. That's when she started going down hill with her nursing. My Dr. does my BP and he checks my weight at times because of how she is. She still has a lot of medical problems now so I think that makes it hard for her to concentrate. I'm ok with how she is and I know that I am ok with where I am with my medical care so it doesn't bother me. She is a good friend of mine also. She knows about cronic pain now also so that helps her to relate to people.

My other nurse that I dearly love is a good friend also. She now has Fibro and other medical problems. She's a lot younger then me so she can relate to me also.

Some people have to work to make a living and even though they are not at their best at times, I know they are doing their best.

You are right about the RSD though. My PA and PCP had only had one case of TOS and RSD in their 20 years each of practice so they couldn't diagnose me but once I got diagnosed they ran with it and take care of me with it.

As far as Drs. taking care of a person in the field they are in. That is not always the case. It took me seeing 4 Neurologist to find the one I like. It took me 4 PM Drs. to figure out I wasn't going to find one. I am picky about my Drs. and I make sure they know what they are doing before I let them touch me. I had too many bad experience to stick with a Dr. just because he's there and he's in the field I need. I think in any field we get people at both ends of the spectrum.

You seem to know a lot about other issues and I notice that because of the one nurse I have. As I said, she could tell me what was wrong with me when she heard my symptoms. I was just always in awe of her because of it. I admire people that know and care about people.

Thanks again,
Ada

Ada,
I understand what you are going through with your feet. What you have going on, sounds pretty much like how my feet feel. I also understand your confusion. See...I have AWFUL feet. Just plain awful. I know that I have made many jokes over the years in reference to my huge, big, flat feet. I joke about it, because there is no denying the fact that they ARE Big and HUGE, and very very flat. But, I have problems because of the flatness. I always have.

You know that I have RSD in my rt foot & leg. It started out in my rt foot when I stumbled into and whacked my big toe into a curb. Old story, not going to re tell it for the umpteenth time here again, and waste all of that space and time writing a novel about it. LOL. However, I also deal with pain in my LEFT foot, that doesn’t have anything to do with RSD. In fact, one of the reasons that I was able to try to ignore and not worry so much about the pain that I had going on in my right foot when all of thise RSD crap started, was because I had gotten so used to just ignoring the pain in my feet. Well....as best as I could. I mean, it always gets to the point where it pretty much just grabs and holds your attention, doesn’t it? LOL. Feet pain SUCK, I know I don’t have to tell you that.

If you already know that you have RSD to deal with in one foot/leg....then you HAVE to pay attention to the other one, to try to keep it as healthy as you can. The “good” foot/leg will hurt because of over-usage. I know that mine does. Even if I am just standing, leaning on my crutch of cane, I put my weight on that one poor good foot. It gets tired out quickly, and then starts signing it’s old song and hurting in many similar ways to my “bad” one. Similar, but also different, if that makes any sense at all.

You might be doing the same thing. I don’t know if your feet tend towards the flat side, of if they go towards having a higher arch. Doesn’t really matter, as I have learned that both things can cause similar pain. My mother has EXTREMELY High arches....and if she doesn’t have them supported....well....her feet start to hurt pretty badly. Feet and legs, as the muscles spasm and cramp. Just like mine did, and do.

New Balance are supposed to be very good shoes. I am sorry that I didn’t know that until it was basically too late for me. I can’t wear them, as I can’t wear any kind of shoe that encloses my whole foot (which in my case means any shoe that has any kind of back to it. I wear slide ons only). I went through the whole orthotic thing....but didn’t get much help there, because the orthotics make my RSD go crazy for some reason. Or, they did when I was constantly having to go and have my orthotics checked, re-checked, changed and modified to try to get rid of pain. LOL..that was back in the day when I still thought that “getting rid of pain” (or, I guess I should say, “getting it back down to the pain I was already used to dealig with in my feet” instead. LOL) was possible. So, maybe it wasn’t just the orthotics, but the CONSTANT changing and modifying that was helping to keep my foot flared up. I don’t know. I only know that I have had to search and search for what works best for me.

I have gone for....well...YEARS not being able to wear shoes for very long at all. Ever since RSD, I just simply couldn’t keep a shoe on my bad foot. I would get one slid on there, and wear it when I was walking...but AS SOON as I wasn’t, I would kick them off. There have been many times over the years that I have had some MAJOR trouble trying to get a stupid shoe back on my RSD foot, because it had swollen up at least a size or two (or more!!) Bigger than it already is, while I had the shoe off.

I would read with GREAT interest any time there was any discussion about shoes on the forum. I was always looking and hoping that someone would suggest something that might work for me. I can’t count the nuber of times of times over the years that I have read folks talking about how good and wonderful Birkenstock shoes were. I looked on the web site, and about had a stroke when I saw how EXPENSIVE they were. While I have learned that making an investment in your feet by paying good money for a good shoe is VERY important, and VERY much worth whatever the price....I was very leery of these shoes. The main reason, from what I could tell from looking at them over the computer screen, was all of the “orthotic-like” things they had going on in them. It isn’t just a matter of Arch Supports....they have “arch supports” all over the damn shoe! Memories of how orthotics made my foot/feet hurt sooooo bad, scared me away. While I KNOW that I need some sort of arch support, and always look for shoes that have them (a pretty good trick when only being able to wear slide on type shoes), just the LOOK of the things made my feet ache and hurt. CORK soles??? I mean, those are HARD...and HARD isn’t what my poor feet/foot need(s)!

Or so I thought.

I convinced myself even more that they wouldn’t be worth me spending that kinf of money on, just to have them make my feet hurt WORSE, when Meghan got a pair for Christmas from her paternal grandmother back a few years ago. I was curious about them...and while there was NO WAY that my huge old lop foot would fit into her shoe (I wear a WIDE 11.5 or 12 ladies...and a wide 10 to 10.5 in mens. Meghan wears anywhere from a 8.5 to a 9.5 ladies. LOL, it would be like trying to put a LARGE square peg into a small circle hole; just won’t work! ROFL), I COULD stick my hand in there and feel how it felt. I was right; they were HARD in there. Ouch, Ouch, OUCH!!! I thought. LOL

Meghan fell in love with those shoes. “Great for her,” I would think. “At least she will have some good shoes to help keep her feet from getting ruined.” I convinced myself that Birkenstocks were for; (a) “Healthy” feet, and (b) not for MY RSD feet (even though I had read of others that had RSD loving these shoes. Doesn’t matter...we all know that RSD is different in all of us, and what works for some, doesn’t for others. Yada yada yada. Plus, I just have, and ALWAYS HAVE had, ROTTEN Feet! LOL). Plus....when I read the “Directions” that come with the shoes, I was even MORE convinced. When you get a pair of Birkenstocks, they come with directions that tell you that you CAN NOT just start off wearing them all day long. You have to get your feet “Used To” them, and can only wear them for like an hour or two a day (at home, they even say...something that always sets off warning bells and sirens for me, rather it is about foot wear or medications. You know?), and then gradually increase that time, until you are wearing them all of the time.

I looked at those shoes, and just saw “RSD FLARE UP!!!!” So, I didn’t think about ever trying them for myself again.

Until 2 Christmases ago, that is. Meghan and my Mom talked, evidentially. My Mom and Dad got on the computer, and looked at the Birkenstock shoes. They did research (LOL...I can just picture them doing this. LOLOL!), and decided that this would be something for me to try. My Mom asked me about them, even, being all sneaky and whatnot. I told her what I thought...which was OUCH! But, stubborness runs in my family...and just every so often that is a GOOD thing. ROFL

I got a pair of Birkenstocks for Christmas that year. I was very....duibous, to say the least. First off....OUCH is all I could think, and Secondly, NEVER can I just “order” ANYTHING, but especially SHOES, and have them fit without even trying them on first. Some how, these shoes DID fit (I only had to loosen up the buckle part on hole on my good foot, and 2 [I think] on my bad one). And, weirder than that? THEY FELT GOOD!!!

I was worried, because one of the arch supports that they have, is one that goes under your toes, where they connect to your foot. On my BAD foot, my big toe is fused, so I basically don’t have a joint there anymore. It doesn’t have that natural bend, like the other toes, and isn’t capable of movement (well...not until you get up to that last top joint. THAT moves. In fact, it is getting warped over time, with the top end of my toe turning inwards towards it’s neighbors, while the rest is ram rod straight. Sounds pretty, huh? Gag). But...that “support” didn’t hurt. NOTHING about the shoes hurt my foot, not at all. I was AMAZED!!!

Of course, I was very careful to read and follow the directions, and NOT wear them more than a little bit at a time at first. I could feel my feet getting “tired”, and I didn’t want to flare them up. So, it probably took me more time than it would take someone else. But, how those shoes felt when I first put them on, and up until that first “tired feeling” started was WORTH time time it took to get used to them.

I LOVE my Birkenstocks! They are worth EVERY BIT of money they cost! In fact, I have TWO pairs now; the clog type (or whatever you call that style....) with the cork bottoms (that you can get replaced when it needs to be, instead of having to buy a whole other pair of shoes!), and a sandal type that has a very grippy rubber sole bottom (meghan says that they are called “hiking sandals” which seems weird to me. I mean..WHO goes HIKING in sandals??? YIKES!). I don’t wear ANYTHING else. Well....I guess that is wrong. They don’t exactly look nice with a nice dress, so I have worn other shoes when I had to dress up, like for each kids graduation and such. But, other than that...I don’t wear ANYTHING else on my feet, besides my slippers around the house.

If you are having trouble with your GOOD foot, because it is tired from doing most of the work, or if you are having troubles with your feet not being supported well enough (which is a lot of what sounds like you have going on....and one pain flares up another. I know...that is my life! LOL), you really might try looking into Birkenstocks. I know that they are pricey...and I understand about being worried about spending that kind of money on something you worry might not work for you (and to be honest....like I already said...everyone is different, and different things work or don’t for different folks. We all know that. So it is possible that the might not be the shoes for you, like they are for me)....but if there is ANY way that you can figure out a way to try these shoes out, I really recommend them. I wish that I had been able to have some my WHOLE LIFE, as I can only imagine what it would have felt like to not have to deal with the foot pain that I basically lived with, before it was way too late, and horrible damage was done (including the RSD moving in), from all of the wrong kinds of shoes and supports and orthotics and whatnot.

Anyway....here I went and wrote you another book to read, just about SHOES! ROFL. So, I guess that I will end this here. I am sorry that I can’t seem to just write the really quick and brief posts that others can. LOL..can you imagine how long this would have been if I HAD gone back over “My RSD Story” yet again??? SHEESH!!!! At least I kept that much cut out, and this that much shorter...right? LOL

Hope that you have a better night tonight sweetie. I know that this is a hard time of year for you.....

Love and
Jose

I do have arch problems also. I was told that back in 91. We lived in Raton, New Mexico for about a year and I ended up in the ER because of foot problems. The Dr. told me that the tendons that run down the back of my leg through my foot was too short and that was what was causing the problem. After I got better, I didn't start having anymore problem with my feet until the RSD in 98.

My right foot with the RSD is starting to swell now. I am having trouble wearing a shoe on the right foot now. Just another damn thing to deal with. I showed my foot and leg to my Dr. and he said I was retaining water in the right leg and foot. My RSD in that foot started from a Neuroma that I have under my right toe next to my big one. I was suppose to have surgery on it about 5 years back but I had other things going on to deal with. I ended up getting shots, boy do those hurt. They did help though. Shots in the feet and hand are the worst ones to get.

I had never heard of those shoes. I say that but on the old forum we did discuss shoes a lot so I probably did and just didn't remember.

Talking about your RSD story. I can remember a lot of your history from the old forum. If we could take all of our threads and post and put them into one thread then we could have all of each others stories in the same thread where everyone could go back and read each others stories and update every once in a while. It seemed like we all talked like friends more back then and just let go and didn't worry about people not liking each other or distrust.

I had an aunt that had size 12 shoes. She had so much trouble back then finding shoes that fit her at all. Thank goodness they allow for things like that nowadays. I wear a size 8 and it must be one of the most common sizes and I must have pretty good taste in shoes. When I go into a store, that seems to be the only size I can't find in the ones I like.

I have a pair of the New Balance shoes. Susan got those for me and I ordered a pair of sandels from Avon made by Curves and they seem to help unless I am on my feet for too long. What I mean by too long is a couple of hours anymore. By the night time I can't walk. I get out of bed to go to the bathroom and I have to limp to it. I thought I would finally get them calmed down but I haven't so far. Now that I have the swelling in the right one and my shoes don't want to fit right it's even worse.

The weather is getting cold here and I am going to have to start wearing the new balance shoes. I will check into the other brand you are talking about. Money is an object for me since losing Bill but the kids help me out a lot.

I couldn't sleep so I got up to see what was going on here but of course there aren't many on here anymore day or night it seems. I must be more of a home body then most people. I won't even go to Church because of my Cronic Fatigue. I am afraid I will fall asleep and fall over on the next person. I use to do that when I was a kid. I know I had the CFS from childhood.

I am wondering if I stayed off of my feet for a few days if they would finally calm down. I am on them too much. I'm not the kind of person that can sat still.

I was wondering if RSD goes into areas where we have had injuries before RSD. You talked about stubbing your toe. When I was in hight school, I kicked the bleacher and messed up my toe next to my big toe and that foot is now the RSD foot. Between it and the Neuroma I don't know what might have caused the RSD.

Thanks for the info on the shoes. I do read your books. I am getting better at being able to sit still long enough to read a little. It took me weeks to finish the book my Dr. gave me to read.

I bet you could write a good book. You don't leave anything else. When I start writing, I don't know where to start and what to put in or leave out.

Hope you are snoozing away right now.

Love ya,
Ada

Hi Jose,


I LOVE BIRKENSTOCKS TOO
They are the only things I can get over my huge feet and my kids tell me that I look almost "cool" in them. ----not sure about cool but I do know if I have to wear anything on my feet they will be Birkenstocks.
Cheers
Tayla

these look nice and have the wide mouth nessary if the ankles don't bend right, extra shaped removable insole and the biggy for me... lightweight. and a gosh fine lookin pair of shoes too.

http://www.softmoc.com/ca/systemshow-item_I074011

right now I am wearing Dawgs, a very similar shoe to the popular collored clogs that people wear alot these days. like walkin on air..

http://dawgsclogs.com/

being light is my main concern both dawgs weigh in at a lil over 1/2 lb together. I also have very little tollerence for a heel or back suport on the heel due to trauma in that area.

Boots in the Dawg line are called Sheep Dawgs and can be found here:

http://sheepdawgs.com/

hugz,
Sandra

Thanks for those Sandra,

I have not seen those birkenstock clogs here in Australia but will look on their web site as they look comfy.

The Dawgs look like Crocs which I thought might be the next type of shoe I might try. Do you know if they are similar?

Of course I would prefer bare feet and at home it isn't a problem but I get stared at enough without exposing 2 big fat multicoloured feet to the world.

Cheers Tayla