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Yahoo!!! Pictures attached?????
Attachment 4263
Attachment 4264 Attachment 4265 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). |
I see them just fine and it does enlarge when I click on them! :D 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 |
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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!!! |
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!:hug: |
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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...... |
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 |
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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!! |
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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! |
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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!!! |
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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!:hug: |
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Hugs, Karen |
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No.....go ahead and say "cool"......I, too, am glad I'm not the only one!!:cool: "Getting an EMG would be the only sure fire way to find out for sure if there's any nerve damage in the foot or ankle. Of course that particular little test can really hurt some people. I've talked to enough people to have figured out that those with touch sensitivity usually HATE the emg. When I had mine done I was only sensitive to air so it wasn't as bad as I had feared. The doc that it, neuro, did it from my lower back, down both legs and feet. For about 3-4 days after I felt like I'd been stabbed repeatedly(which I had LOL), run over by a very huge semi many times and went a few rounds in the ring. I was sore....well more than that but close as I can come up a word." And the purpose of this excruciating test is what??? To determine for sure that I have actual nerve damage??? I have RSD......isn't that technically more serious than "nerve damage" anyway??? :) I think I would simply have to physically hurt anyone that poked (or touched) my left foot or leg. They would be in a headlock on the floor and wouldn't know what hit them.:deadhorse: (this may technically be "beating a dead horse" but I call it "someone trying to send nerve impulses through (as if I don't feel enough of those anyway) or sticking my hurt leg with needles (and those too)" getting what they deserve!!) I think that would pretty much convince them that something was seriously wrong. I could probably walk away with most any diagnosis I wanted!!! LOL!!! :icon_lol::) Interesting thought though!!!! I'll keep that one on the back burner!!! |
Yup that's the whole purpose of it! LOL (Love the emoticon and it is appropriate since I know what it means lololol)
Some docs want to know if there is nerve damage, others figure, rightly so IMO, the rsd is top priority...especially if they can't "fix" the nerve damage. I think if you do have any nerve damage in that spot in your foot, there's most likely nothing that anyone can do to fix it anyway. It doesn't seem as if it ranks up there with say carpal tunnel or something. Surgery isn't anything you'd want to have happen again....especially now....if it wasn't a life or death, absolutely necessary thing. Hugs, Karen |
Hi Mom in Pain
From the way you describe your symptoms, to some extent they don't sound too different to mine or to the path mine are taking. They have not followed the extreme symptoms that a lot of the people on this site describe and mine have changed and become less intense rather than more intense over time. That said I have fairly extreme movement problems which started 6 months after my CRPS started, developed over several months and have become completely disabling. None of the ususal drugs have worked for these (diazepam, baclofen, dantrolene) and I wouldn't be surprised to find that eventually the pain largely goes away but I am left with these disabling spasms, tremors and so on. I got CRPS after surgery to repair my right, ruptured achilles tendon. I was in a series of casts for 10 weeks after the surgery and it took 12 weeks for the 5 inch incision to completely heal up. I can reassure you about one thing - the numbness you have after your surgery around the incision is totally normal. This happens because the tiny nerves in your soft tissues are cut when the incision is made and then they work to re-grow. The numbness tends to decrease very, very slowly over time (nerves re-grow incredibly slowly) but it is also completely normal to be left with residual loss of feeling in the scar area. I am 16 months post surgery and still have numbness in the incision area. If you had sustained damage to an identifiable "major nerve" then it would probably be more apparent and you could expect to have a larger area with loss of feeling, or control. You would have been diagnosed with Type 1 CRPS. This area would correspond to the area of the limb served by the specific nerve rather than the incision site. Even then, it is still possible for nerve re-growth and some or full recovery to occur over time. The EMG and nerve conduction studies that are used to assess nerve damage are uncomfortable and unbearably painful for some CRPS sufferers but by no means all. I think for some of the people on here who have much more extreme symptoms it is more of a problem. I had them done about 5 months ago alond with a raft of other tests because I developed severe movement disorder problems as part of my CRPS symptoms and it was essential to rule out any other neurological problems, such as MS. It was absolutely fine. It is not exactly fun but the worst I had was a little discomfort even when the needles are stuck into the muscle round my CRPS affected area. They are short, very sharp and very thin (even thinner than acupuncture needles) so its painless. These studies show up other causes of nerve damage or lack of signal conduction than the sort of damage that exists with CRPS Type 2. If you have Type 2, then you can expect the results to be normal even with quite severe symptoms. If these tests are suggested then get them done - you can stop them if it is too unpleasant but the chances are you'll be OK. You should also take heart from the fact that anyone who has surgery, especially orthopaedic surgery to an ankle or foot can expect stiffness, soreness and swelling post surgery. This can last for a very long time too and is generally aggravated ny normal rehab activity like movement and weight bearing - however necessary the rehab is. In the case of achilles tendon ruptures the swelling and pain can take the best part of a year to completely subside even with a completely normal rehab and no CRPS complications. Remember that much of what you are experiencing may well be a feature of a realtively recent, normal underlying surgical recovery rather than the CRPS itself. I found that I only had the colour changes when I stood up or sat with my legs down. I was prescribed an alpha blocking drug to help keep the blood vessels dilated which has worked well for me. In the UK the drug is called alfuzosin (Xatral) and it's licensed use is for men with benign prostate enlargement - helps them urinate! This has stopped a lot of the dramatic colour changes and significant cold temperature problems. I still have some problems on this front but its nowhere near as dramatic. I also made sure that I didn't let the swelling get out of hand - I kept my leg elevated at night when in bed and on medical advice continued to use the air walker (that was used for my last 4 weeks of casting) at night in bed. It can be tightened or loosened to control oedema. That way I didn't compromise the need to keep moving my leg but I did give all of the swelling a chance to completely subside every night. I have found that over time the swelling has become less of an issue partly because of the underlying post-surgical swelling going away and partly becuase I am at least able to walk about more albeit with crutches. From day 1 my pain was never present 24 hours a day and was only rarely burning in nature. I generally have the deep, cold aching pain. The sympathetic nereve block was useless for my pain although it changed the color and temperature to virtually normal for a while and eased the stiffness so diagnostically it confirmed CRPS. I have accepted the need to take a full package of meds from day 1 on the basis that there is nothing at all to gain from not taking drugs that help. I have had considerable pain relief from the meds. I also found that the meds reduced the allodynia too. I think you can probably take heart from the positive progression of the symptoms you have. Nobody can predict what might happenbut at least your situation is positive for now. Have you researched the "normal" post-surgical outcomes, rehab timelines and symptom experiences for the specific surgery you had? This might give you some idea of whay you could have expected if you hadn't had the complication of CRPS. Good luck anyway. |
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