[MominPainRSD]

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The first two were right after my block. The third one was actually Christmas Eve......this is what happens when I'm on my foot for too long (i.e. a few hours). I haven't made that mistake since. I hope this goes through!!!

Hey.....you can click on each one and enlarge it (or at least I can on my computer).

[GalenaFaolan]

I see them just fine and it does enlarge when I click on them! I remember when I'd swell like that too. I feel soooo lucky I only have minor swelling in my ankles. It's always there but doesn't interfere with anything. In the start my knee/lower leg/foot would get to be three times the size it should be.

Hugs,

Karen

[MominPainRSD]

Originally Posted by GalenaFaolan

I see them just fine and it does enlarge when I click on them! I remember when I'd swell like that too. I feel soooo lucky I only have minor swelling in my ankles. It's always there but doesn't interfere with anything. In the start my knee/lower leg/foot would get to be three times the size it should be.

Hugs,

Karen

How long after your symptoms started before the swelling would start going down??? Did your RSD start after surgery??? You're right, it is primarily the SWELLING that is causing the pain and probably most of the nerve sensations (I think). I've tried to wear a compression stocking but it just swells in response to THAT pressure as well (plus, I get this lovely "ribbed" effect all up my leg.....looks like a big condom).

If the darn swelling would go away and stay away, I think I could be ok. It makes me stiff when I try to walk, which throws off my balance, makes me limp, then makes other parts of my body hurt (back, hips, knees), and I get tired from the extra effort (and on and on and on).

Anyway, I am convinced that the nerve block helped some. I'm game for the second one. I'll take baby steps if I have to in order to gain back my tolerance for mobility. I just didn't know if it was supposed to swell like that as a direct result of the block.

Thanks for replying!!! I am so bored!!!

[ali12]

Thank you for posting the pictures - I can see them just fine also!

Your leg looks sooo much like mine with the swelling and colour changes however my foot is rotated out to the side due to a condition called 'Dystonia' which is thought to be a complication of the RSD. The swelling in my case didn't start straight away but all of the other symptoms started immediately ... it took about 16 weeks for the swelling to appear and it hasn't gone down in over a year unfortunately. When my leg first swelt up, my doctor thought it was a blood clot so sent me for an emergency scan - thankfully it turned out to "just" be RSD but it REALLY scared me and my mum!!

I hope you find something that works for you soon and please know that I am thinking of you and if you need anything, I am here for you!

[MominPainRSD]

Originally Posted by ali12

Thank you for posting the pictures - I can see them just fine also!

Your leg looks sooo much like mine with the swelling and colour changes however my foot is rotated out to the side due to a condition called 'Dystonia' which is thought to be a complication of the RSD. The swelling in my case didn't start straight away but all of the other symptoms started immediately ... it took about 16 weeks for the swelling to appear and it hasn't gone down in over a year unfortunately. When my leg first swelt up, my doctor thought it was a blood clot so sent me for an emergency scan - thankfully it turned out to "just" be RSD but it REALLY scared me and my mum!!

I hope you find something that works for you soon and please know that I am thinking of you and if you need anything, I am here for you!

Oh dear.....so you've had your swelling for a year??? I am so sorry you've got dystonia as well. I try so hard to keep moving my ankle around to maintain flexibility. Are you on any muscle relaxants??? I have been on them for over a year for another medical condition. I wonder if it hasn't helped keep my ankle pliable just having had it on board all this time???

The odd thing is that the color changes (for the most part) ONLY occur when I stand.....they are not present when I'm lying down. I'm hoping that is a good sign of this being a "mild" case. My foot still has the other symptoms (tingling, jabbing, electric shocks, getting hot) regardless of my position....it just only turns red when I stand (and stays that way the whole time I'm up......I can feel it and tell when it's getting worse). This disease is so mysterious......

[GalenaFaolan]

I'm kind of weird anyway so take it when I tell you what happened. It was bad for the first 5 months. I learned to walk on my own again and one day......gone!! :O Just gone. I don't know why or how, it just did. Lots of rsd'ers have swelling and it stays with them, unfortunately.

As for the color change only being there when your foot is down is due to blood flow. When it's down the blood rushes down as well and because we have a lack of proper circulation that's when it shows. When you lay down your legs and feet are now elevated and thus look "normal" again. The first doc I saw hiked my leg and foot in the air and says "See, it's looking better already!" Well DUH!! You just elevated my leg and foot dumb butt!!!!! *rolls eyes* Geez..... So that's they "why" of why it only turns colors when the leg and foot are down.

My rsd started after I broke my kneecap on a broken handle at work. Unfortunately the ER had said my knee was only "badly bruised". Pffttt. I found out 8 months later after my first bone scan that it had been broken. It showed up on it plain as day! There shines like a beacon a healing fracture in the knee. *sigh* If I'd known that I sure as heck wouldn't have been walking on it a week and a half after I got hurt!!

I think most of us take a muscle relaxer. I've been on baclofen for about 3 years now. I think it has probably helped you. I started taking it because my jerking arms and legs got to the point I couldn't stand it anymore. You know how when you jerk a puppet's string it's arm or leg does that movement? That's why mine would do anytime, except it wouldn't stop for sometimes an hour or more. That was so aggravating! It rarely does it now but if I'm in a lot of pain or try to stand or walk too long, my left leg especially will start jerking and won't stop.

Hugs,

Karen

[MominPainRSD]

Originally Posted by GalenaFaolan

I'm kind of weird anyway so take it when I tell you what happened. It was bad for the first 5 months. I learned to walk on my own again and one day......gone!! :O Just gone. I don't know why or how, it just did. Lots of rsd'ers have swelling and it stays with them, unfortunately.

As for the color change only being there when your foot is down is due to blood flow. When it's down the blood rushes down as well and because we have a lack of proper circulation that's when it shows. When you lay down your legs and feet are now elevated and thus look "normal" again. The first doc I saw hiked my leg and foot in the air and says "See, it's looking better already!" Well DUH!! You just elevated my leg and foot dumb butt!!!!! *rolls eyes* Geez..... So that's they "why" of why it only turns colors when the leg and foot are down.

My rsd started after I broke my kneecap on a broken handle at work. Unfortunately the ER had said my knee was only "badly bruised". Pffttt. I found out 8 months later after my first bone scan that it had been broken. It showed up on it plain as day! There shines like a beacon a healing fracture in the knee. *sigh* If I'd known that I sure as heck wouldn't have been walking on it a week and a half after I got hurt!!

I think most of us take a muscle relaxer. I've been on baclofen for about 3 years now. I think it has probably helped you. I started taking it because my jerking arms and legs got to the point I couldn't stand it anymore. You know how when you jerk a puppet's string it's arm or leg does that movement? That's why mine would do anytime, except it wouldn't stop for sometimes an hour or more. That was so aggravating! It rarely does it now but if I'm in a lot of pain or try to stand or walk too long, my left leg especially will start jerking and won't stop.

Hugs,

Karen

Don't ya just love the good ole docs??? I went to Urgent care 3 days after the excruciating pain/color changes started (thinking I had a blood clot) because the darn surgeon who operated on me refused to see me. Even the Urgent Care doc (though he could see from my shaking and profuse sweating that I was in severe pain) said the color change was "normal". I wonder.....should I take some info on RSD by there for him to read??? Or perhaps to the doc that operated and diagnosed me (telling me at the same time that people that had this 50 years ago ended up in a "nut house") and then rushed out of the room in a hurry to see his next victim??? Ohhh, Momma's a bit bitter after all, eh???

Ok......so no "mild case" denial for me......the color change when standing is par for the course. The severe burning pain isn't with me like it was in the beginning (THAT was bad......as severe as labor). Now it is more of a throbbing feeling of increasing pressure (and I can tell without even looking when it is turning bright purple). My theory is that the postural change was more pronounced in the beginning because I was elevating my leg (as they instructed.....six inches above my heart or greater) after the surgery and so the gradient was more. That could be why the severe burning pain isn't present anymore (that and I've quit icing it).

The twitching has actually been with me for years even before RSD (have mentioned it to many docs.....no one cared)....has gotten worse (more of an occasional tremor or rapid twitch) since my diagnosis....especially in my left thigh. I accidentally bumped my hurt foot a few weeks ago and it twitched and flopped around for several minutes like a fish out of water. They switched me from Zanaflex to Flexeril about the same time. I only take it in the evening.....it makes me really sleepy.

Ok.....so the swelling may go away or not......I'll see when I get there. I do think I have some nerve damage from the surgery.....I have areas of my left foot where I have decreased sensation (especially on top of my ankle). I have to be really careful when I shave my legs to not cut myself there (and the allodynia is bad there too). Being in the shower always hurts and makes it swell.

Ok......I'm just rambling now.....everyone take care and have a pain-managed evening!!

[ali12]

Originally Posted by MominPainRSD

Oh dear.....so you've had your swelling for a year??? I am so sorry you've got dystonia as well. I try so hard to keep moving my ankle around to maintain flexibility. Are you on any muscle relaxants??? I have been on them for over a year for another medical condition. I wonder if it hasn't helped keep my ankle pliable just having had it on board all this time???

The odd thing is that the color changes (for the most part) ONLY occur when I stand.....they are not present when I'm lying down. I'm hoping that is a good sign of this being a "mild" case. My foot still has the other symptoms (tingling, jabbing, electric shocks, getting hot) regardless of my position....it just only turns red when I stand (and stays that way the whole time I'm up......I can feel it and tell when it's getting worse). This disease is so mysterious......

Thank you for your kind words, I really appreciate them ! Yes, my leg has been swollen for over a year now which is really frustrating as sometimes it feels like i've got a cast on my affected limb and I can't walk very well because of it. The swelling varies from day to day and to what I have been doing - if I have been doing more, the swelling seems to get worse and when the pain is worse, the swelling is worse - it's so frustrating!!!

I am not on any medications at the moment because non of them worked for me at all and the side-effects often outweighed the benefits so my doctor thought I was better off them. I have been on several muscle relaxants including Baclofen, Diazepam, Kenadrin, Propranolol etc but they didn't work and my doctor felt that they were making me way too "floppy" as I couldn't stay upright very well so I had to come off them almost straight away.

The Dystonia started almost straight away for me so I think that is what made it hard for me to move my leg ... the Dystonia didn't happen because I didn't move my leg but rather because I couldn't move my leg according to my Neurologist if that makes any sense! My doctors aren't sure whether the Dystonia started first or whether the RSD did - I think they both started at the same time to be honest but i'm not sure and don't think we ever will be!!

I really hope you get some much-needed pain relief real soon and I am keeping you in my thoughts and prayers! I'm glad to hear that the colour changes only happen when you have done too much at the moment - my leg seems as though it is forever blue or red so my mum calls it the "Rainbow Leg" lol.

If you need anything, please know that I am here for you and you can always PM me - i'm happy to help you if I can because I know how scary it is dealing with RSD!

[MominPainRSD]

Originally Posted by ali12

Thank you for your kind words, I really appreciate them ! Yes, my leg has been swollen for over a year now which is really frustrating as sometimes it feels like i've got a cast on my affected limb and I can't walk very well because of it. The swelling varies from day to day and to what I have been doing - if I have been doing more, the swelling seems to get worse and when the pain is worse, the swelling is worse - it's so frustrating!!!

I am not on any medications at the moment because non of them worked for me at all and the side-effects often outweighed the benefits so my doctor thought I was better off them. I have been on several muscle relaxants including Baclofen, Diazepam, Kenadrin, Propranolol etc but they didn't work and my doctor felt that they were making me way too "floppy" as I couldn't stay upright very well so I had to come off them almost straight away.

The Dystonia started almost straight away for me so I think that is what made it hard for me to move my leg ... the Dystonia didn't happen because I didn't move my leg but rather because I couldn't move my leg according to my Neurologist if that makes any sense! My doctors aren't sure whether the Dystonia started first or whether the RSD did - I think they both started at the same time to be honest but i'm not sure and don't think we ever will be!!

I really hope you get some much-needed pain relief real soon and I am keeping you in my thoughts and prayers! I'm glad to hear that the colour changes only happen when you have done too much at the moment - my leg seems as though it is forever blue or red so my mum calls it the "Rainbow Leg" lol.

If you need anything, please know that I am here for you and you can always PM me - i'm happy to help you if I can because I know how scary it is dealing with RSD!

I know exactly how you feel about trying to walk and it feeling like you're in a cast. I don't feel like my foot/ankle are quite mine anymore. The skin is different and it has a mind of its own. Yes, I get the same thing.....the swelling comes and goes......sometimes in a few minutes.......pending on my activity level. They SAY how critical it is to stay moving to avoid osteoporosis and immobility issues, but when I do that, it swells and hurts which only makes me stay in the bed more the next day. It sounds like you experience the EXACT same thing as me. Apparently there is some "happy medium" I'm supposed to find.....hard to do when one limb has a mind of its own (sorry I keep saying that.....don't know how else to put it!).

I am so sorry you've got the dystonia. I've seen pictures of it and what it does to your body and it looks absolutely miserable. Are you able to go to school??? How do your friends react to your situation??? Do you know anyone else personally in the UK with this???? I really want to avoid taking any more meds than I'm already on as well. They all have such nasty side effects.

Yes, my foot changes colors every time I stand. I wear socks as much as I can (since it's cold) so I try not to look at it often. It gets hot to the touch only once a night now for a few minutes (maybe 30). I have NO idea what precipitates that. It oddly seems to be happening later and later each night.

This disease really baffles me. I hope and pray for a successful treatment for this SOON. I'm glad you're part of this forum. You are a sweetheart and have so much to offer the rest of us!!!

[ali12]

Originally Posted by MominPainRSD

I know exactly how you feel about trying to walk and it feeling like you're in a cast. I don't feel like my foot/ankle are quite mine anymore. The skin is different and it has a mind of its own. Yes, I get the same thing.....the swelling comes and goes......sometimes in a few minutes.......pending on my activity level. They SAY how critical it is to stay moving to avoid osteoporosis and immobility issues, but when I do that, it swells and hurts which only makes me stay in the bed more the next day. It sounds like you experience the EXACT same thing as me. Apparently there is some "happy medium" I'm supposed to find.....hard to do when one limb has a mind of its own (sorry I keep saying that.....don't know how else to put it!).

I am so sorry you've got the dystonia. I've seen pictures of it and what it does to your body and it looks absolutely miserable. Are you able to go to school??? How do your friends react to your situation??? Do you know anyone else personally in the UK with this???? I really want to avoid taking any more meds than I'm already on as well. They all have such nasty side effects.

Yes, my foot changes colors every time I stand. I wear socks as much as I can (since it's cold) so I try not to look at it often. It gets hot to the touch only once a night now for a few minutes (maybe 30). I have NO idea what precipitates that. It oddly seems to be happening later and later each night.

This disease really baffles me. I hope and pray for a successful treatment for this SOON. I'm glad you're part of this forum. You are a sweetheart and have so much to offer the rest of us!!!

Thanks again for your kind words, I really appreciate them! I'm sorry that you have to deal with the same things as me and I really hope things get better for you soon! I totally understand what you are saying about your leg not feeling like it is part of you ... that's exactly how I feel and sometimes when the swelling is really bad, it affects the nerves and decreases the sensation so my leg is really numb but yet I still have awful pain which is really strange!!! My Doctor couldn't understand it at first as he had never seen it before but now he say's that the swelling is affecting the nerves so my PT's try and do some exercises to get rid of it.

There aren't that many people in the UK that have RSD. I have spoken to a few online but never actually met anyone with it in person. My Doctor had arranged for me to meet with a 15 year old girl who has RSD not so long ago but I was ill so wasn't able to go unfortunately and the girls mum is now in hospital so we are having to leave it until a later date. I really hope that we are able to meet up soon as I feel it would do both of us and our parents lots of good!!!

I spent almost a year off school and because of the RSD, I am now having to go to a special school about 20 minutes away from where we live. The teachers at my old school just didn't understand and were forever giving my mum fines for all of the time I had off school for hospital appointments and they would complain at me in lessons if I wasn't concentrating (RSD affects my memory and concentration skills). At the new school, the teachers understand as there are quite a few other children there that have health complains. It makes the world of difference when someone actually understands what you are going through and don't judge you!! At the moment, I just go to school for 4 hours every Monday, Wednesday and Friday as I found it way too hard going full-time.

Not many of my friends understand what RSD is. I have lost sooo many friends because of my illness because they just couldn't understand why I wasn't able to do all of the normal things that they wanted to do. Having RSD has really made me realise who my true friends were but unfortunately, I had to learn the hard way. It is SO hard at times not having that many friends to talk to because of this horrible illness and I get pretty lonely at times - I still have some friends who understand but no where near as many as I did. Unfortunately, many of us with RSD have lost friendships and it is so hard to cope with at times - I hope and pray you don't have to deal with that.

Sorry if i'm rambling, I should really be in bed as it's 11pm and I have school in the morning but it's another night of no sleep - ugh! I'm thinking of you and am here if you ever need someone to talk to!