On the subject of toes - don't give up - I know LOTS of people who have regained the use of their toes.... One thing that some people always mention is trying to pick up an empty toilet rool with your toes - you won't be able to do it at once but apparently it's great physio.....

Thinking of you and hope you're ok ! ! !

Love

FRxxxxxxxxxxx

Speaking of toes... I have had your experience.

I could move all my toes on each foot and then the next day I could not! I told my physical therapist this, and so he had me try and move them- and sure enough, just like I said- they would NOT budge at all!

Now each day at physical therapy he moves them (can I say "OWWW"?!). First time was the hardest- I screamed the second he just touched my foot, so you can imagine how I screamed when he BENT my toes!

Now it's been two weeks since I could move my toes on my own, and with my therapist moving them each day, I can move them a teeny bit on the right foot. Toes on the left foot I cannot, but that is the worse side anyways.

How is your therapy going?

Ok, I'm glad I'll hopefully be able to move toes again. It happens to my fingers and hands occasionally, but I am able to get them moving again within like 10 minutes or so.

Therapy is really hard, but its doing pretty good. I have 2 ot sessions and 2 pt sessions, lunch , and like 1 or 2 breaks. It is really hard. I have 2 different pt's and one main ot but I've seen 2 other ones besides him. They are all really different and do different things. Dan, ot, is hardest. He seems to have no sympathy. Liza and Kalynne are my 2 pts. Kalynne is really hard too, but not like Dan. I like Liza best. She eases her way onto things and is gentler. The 2 other ot's are really nice and easy.

After 5 days, the got me walking It was really hard though because of arms. They wanted me to use crutches and I started to cry because I knew how much support I would need for both feet but I knew arms wouldn't be able to take it. They had me do it and my arms went numb and I fell. They got rid of the crutches pretty quickly. I had to learn to walk holding onto Dan. That hurt bad too. Liza focuses mainly on walking correctly (I only use heels cause I can't move toes on right foot and balls of feet are worst and originally broke ball of right foot and never recovered fully before RSD) and desensitising. I hate desensitising. She started out with my fuzzy socks and lotion and her hands and then moved onto washcloths (owwww) and so on. Walking using front of feet isn't going so well.....it is getting so bad that she along with Dan and Kalynne (held private 5 minute meeting with me like 10 ft away) decided to put wedges under my tennis shoes. I wasn't too happy about that but I still managed to walk on heels and stand on them and so on. Kalynne said I would get tired eventually which I did. I didn't like that. With walking correctly, I never thought of how difficult it actually was and how if you don't do one simple step, you fall or limp.

They have these 2 machines (which I HATE). One is the Fluidotherapy machine which is filled with "finely grained" cornhusks. Yeah.....not so finely grained to me. The machine pumps warm air and blows the corn stuff and it feels like a severe sandstorm. I screamed the first few times I went in it. Then there is another machine. It is cool, but it hurts. It's Parafin. Its hot wax stuff. You dip your hands in it and as you pull out your hands, they are coated with wax. You let the wax sit for 10 minutes and then pull it off and put it back into the machine and it melts back. My feet aren't blue and purple anymore. They don't turn pretty colors as often now They look almost normal colors. They still kinda swell up though.

Now they are having me work on running and jumping. It isn't going very good at the moment. They had me stop working on running for awhile because I was doing it on heels (OWW) and if I put pressure on front of feet, I would fall over. Jumping....not easy either. I still do it all on heels. I can't really come off of the ground. One cool thing with jumping though that Kalynne noticed. She saw 2 of my toes twitch when I jumped. I couldn't see it, but she called another different pt that works there to make sure she wasn't seeing things and she saw it too. Kalynne was soooo happy. But when I try to move them, they don't budge. She can move them easily, but I can't make them move. It's really weird feeling cause you feel stupid that you can't make your toes move because it was something you could do when you weren't even a year old.

I have about 2 more intense weeks there (maybe more, they don't know). After that, I have to go 3 days afterschool for awhile. Then they bump it down to 2, then either 1 or none.

How is the therapy going now?

Your PT sounds just like mine! I hate the fluido, too... partly because of the ground up corn husks blowing around my arm, and partly because HEAT makes my pain WORSE.

My physical therapists started out slow with the desensitizing, but at this point it is mostly rough (to me) stuff- towel, sand paper, rough fabrics, etc. I HATE desensitization time... but I know I have to do it! If I am having a rough day I am allowed more time to calm down/ rest for a few minutes, or else the pain will just get so bad I won't do anything/ can't do anything on my own. Plus I had an experience before that seems like dystonia, and my therapist doesn't want to overload my body to that point.

I have a favorite therapist too. My therapist is very supportive/ encouraging and he listens to me. He also knows my case very well, and knows more about RSD than anyone else at the PT place. I think you need support/ encouragement/ small amount of sympathy just to help you get through it! That really helps me to keep my chin up!

I only go to PT because my physical therapist is doing a lot of stuff that an OT would do... his wife is an OT, so he knows plenty, too.

Are you allowed to take pain medication before the PT or does your Dr want you to do it without? I take meds. before I go to PT, and it'll just take the edge off of the pain- I am still in a lot of pain, and especially when they start desensitization, but it's something.

My physical therapist is trying to get me walking correctly all of the time. I limp, because my left foot is worse than the right, and my left gets SO swollen. Lately we are working real hard on getting my legs/ feet/ toes moving. I am getting my toes to just twitch, and it's more than I had 2 weeks ago, so I'll take it.

Has your pain improved with the PT or do you think you feel worse after PT? It varies for me, though I know that the back excercises work WELL.

Does this sound hopeful?!: The other day in my lower arms/ hands I had a teeny bit of pain- no pain for 7 hours straight, and the sensitivity was gone for that long, too. Then the pain surged back full force, and my hands got HOT, RED and swelled. But that was more than I've had in a long time! I ahve also been noticing less color/ temp. changes in my hands, and they are moving a lot better! I have been working with making sculpey clay projects, I tried playing a little on the piano and I have done some other things with my hands/ arms (take pics, write, etc)... trying to get my mind off of RSD!

Hope you are well, Nikmcjo!

I am soooooooooo glad to hear therapy is going good for you. The therapy is still really hard, but I am improving slowly. My therapist are now not the sympathetic ones. It is more the ones that aren't my therapist. When they see me cry and sob, they come over and comfort me and give me cookies

Ha, they don't believe in medications at this place. They like refuse any kind of medications whatsoever along with nerve blocks. The only medication I take (i dunno if im allowed or not....) is tylenol with codeine at night to help me sleep some. I don't take it often, just when I am in more pain. It helps me some.

Omg, my therapist are doing the same thing with walking to me. I also limp, but my right foot is worse than my left foot. It still swells up too. I can't get my right knee to bend fast enough. My reflexes are a little messed up right now. I either walk with a straight knee (most of the time, a lil easier for me) or with a bent knee the whole time (more of a limp). My two pts decide to tape up my 4 little toes on my right foot (can't move them) to help them stay up when walking. I hate it when they do that.

With the pain, it just depends on the day and the intensity of the therapy I did. At first when I started, they would ask me on a scale of 1 to 10, what is your pain at (i hated those questions). At first they were like 9's and 9.5's. The first few days, it got worse. Then after a week or so, they got down to between 7 and 8 which was wonderful. Then slowly, they went down to 6. Lately, they have been jumping back and forth between 4 and 5. A day ago (Saturday, no therapy) it was like before all over again, but today it is back in the 4 and 5 range. It feels so wonderful. The only time that it gets back high again is when I like bump my feet or arms into something. Then they throb for the rest of the day. Besides that, the pain has reduced greatly.

Yeah- I know that some places won't allow meds... it's like "grin and bear it" or rather, "grit your teeth, scream, cry and bear it". Argh! I am allowed to take meds before I go to PT, and it takes the edge of the pain, but I'm telling you, I still scream and cry in pain. My therapist will make me do things even if I am crying, because he knows I have to. I wouldn't want him to not make me, because I know my goal... to be rid of RSD through this!

Wow. I'm glad it's going well for you!

It's my left foot that is worse than my right. Plus, like you- my worse foot swells. I hate that. And then trying to walk correctly on it is like walking on a balloon. My therapist goes, "There's a reason God gave you two feet- now use them both"... or just "you have two feet" as a hint. I know he cares and just wants to get me back to normal and he wants me to learn how to MOVE normally.


Oh! I know exactly what you mean about the reflexes being messed up. Sometimes I move so strangely- my left leg bent at the knee as I walk or absolutely straight. And then I get the problems iniciating movement with my left leg- either it won't move at all and I just stand weight bearing on the right side trying to move it or I end up kind of dragging/ pulling it.

Oh, yeah- I was going to ask you- how is moving your toes going? Any sucess?

Well, not exactly....


They occasionally flicker, but not when I try to move them. Kinda weird I can still move my big toe (kinda) but my little toes feel kinda numb except when they hurt. My doc said that it was just weakness and I should get movement back soon but if I can't move them by next appt (in a few weeks) then he will do whatever tests are needed to see if he can tell whats wrong. For now though, therapists are treating it like they are just weak and doing everything they can to try and get them moving.

I have RSD in both hands and went to PT to improve function of hands. At that time I was employed, could type 95 words a minute and just was dealing with intense pain and strength decease. The PT helped improve my functionality and strength for a while, but as my RSD worsened over the past year now there is not much to do. I keep my hands active daily (home exercises from my PT therapist) but can barely type, not just because of pain but my right hand is turning into a claw, my middle finger humps higher then all fingers and I can't straighten fingers at all on right hand, left has more function but not much. So to answer your question, PAIN does limit but sometimes the functionality worsens even with exercise, heat, etc. RSD is a strange creature.

Hang in there.