Hello all I'm new to these message boards. I found them today googling for RSD at work. I have a question (well, maybe a few) about this disease and I was hoping someone might be able to help me.
A little history first - On October 10th of this year, I broke my foot. It was an avulsion fracture of the 5th metatarsal. I think I may have had a stress fracture that I made worse by continuing to jog/walk on it and I finally twisted my ankle and broke it. The Dr i went to told me that it was a pretty bad break (it felt like it for sure) and had me in a fiberglass cast to my knee for 6 weeks (after 3 weeks, they took it off and my foot and ankle were pretty swollen, but he said the bone wasnt where it needed to be yet, so I had another cast put on for 3 more weeks). When they took THAT one off, my leg and foot were both very swollen and I got a walking boot for 2 weeks. After 2 weeks, the dr told me I should stop using the boot, but that I needed to see him 2 weeks later to see whether the swelling had gone down. He said I had something called "cast disease" which some people get and they dont know why. I googled cast disease and could not find anything on it. The swelling did go down a bit, but when I saw him this Monday he said that I had a "touch" of RSD.
My foot feels kind of weird when it touches the ground, but it doesnt feel like the extreme pain I have read about on these boards. It's more a tingling and numbness. My foot and ankle especially are swollen and a SLIGHT bit redder than the other foot and ankle, but hard for me to notice. Until the Dr. talked about RSD, I had assumed it was the natural feel of a foot that hadnt been used for 6 weeks, but its been 4 weeks since I first started putting weight on the foot again and maybe the weird feelings should be gone by now.
I guess my real question would boil down to - can a slight case (if this really is one) get progressively worse and is there anyone out there who had something like this happen to them? I dont have extreme pain, sweating, shiny skin on my foot and ankle.
Any feedback would be appreciated. I'm kind of freaking out. My heart really goes out to all the people I have read about on this board. What an awful disease.
Sorry to hear of the troubles you are having. I will tell you in my experiences with severe medical problems these boards can be a life saver!
RSD is like most other conditions in which everyone responds differently. Some may have 1 or 2 symptoms others may have 5 or 6. Most of the time people with RSD have the severe pain however I believe the last study I read about showed about 1-2% of the patients with confirmed RSD didn't have the severe pain. To answer your question about it getting worse unfortunately the answer is yes. RSD is a progressive condition which means if it goes untreated it can become more severe and/or spread. The symptoms you are having sound like other possible symptoms of RSD but like most symptoms they are symptoms of other things as well. Hopefully, if it is RSD you have, your doctor has diagnosed it early enough that treatment will work and it will go into remission.
I know that being in a cast can cause some redness, swelling, rash, numbness, etc. The cast traps heat in the confined area which can lead to the redness, rash, and swelling. The swelling can then lead to the numbness, etc.; however, normally after the cast is removed for a week or so the area should be back to "normal".
Again welcome to the boards! Hope I have answered your questions and feel free to post any additional ones you may have. We are all here for each oher. Hang in there and have a Merry Christmas
You have come to a great place for questions and support. There are a lot of people on here who are great and really easy to talk to. I do agree whole heartily with what cardshark said. This disease can get pretty bad but people have differences in how they can be effected.
The sooner you can get treatments for it the better you are. Most of the studies I've read and also through my doctor say that getting treatment within the first 6 months of rsd signs raises your chances of success and possible remission.
Has your doctor talked to you about any nerve blocks? Sometimes those are done to make the nerves"sleep" and can help in the early stages to reboot the nerves,so to speak. They don't work on everybody,everybody bodies work differently. But can be very promising and is worth the try. I had 3 done myself. But like I said they don't always work as well as you would hope.
I am very familiar with cast disease. You can get redness,swelling,tingling because of the swelling and even atrophy. Usually after the cast is off and with physical therapy this starts going away after the first week. It can take longer depending on how bad it got and how much if any muscle loss you experienced.
I hope you do not have this disease and if so are able to go into remission since finding it so early.
Don't hesitate to ask any questions. And don't be afraid to vent if you need to. This can be a very stressful thing to go through and can be scary at times too. I wish you the best of luck. Continue to come on here and let us all know how well/not well you are doing.
Have a wonderful holiday and a happy new year.
Take care and stay warm,
Thank you Cardshark and Harmony for your responses......the Dr. has not talked about nerve blocks yet - I think he is expecting the swelling to go down in 6 weeks (when I see him again)....as for the physical therapy, he did give me a referral so I'm going to call next week or possibly afterNew Years, when everything settles down a bit...I've been trying to make the gym every day for an hour - elliptical and bike. I'm hoping regular exercise helps. I'm trying not to freak out and we'll see what happens in the mean time.
Hi Mona70 - First time posting on this topic, I used to post on the foot problems board but thought I would check out RSD. I too am wondering if I have a slight case. My problems began after foot surgery almost 3 years ago. I have been to a number of neurologists and even though I seem to have some neuropathic pain, they have all ruled out RSD. 3 months ago I had revision surgery on the same foot (because on top of everything the first surgery failed and the mechanics of my foot were all out of wack). My bone was realigned and I had a tendon buried in a lot of scar tissue and I had really hoped that this would have relieved this nerve-like pain too, but so far it hasn't. The sensations I have experienced are coldness, electric type pain, like when you hit your funny bone, prickly feeling and if I have something inside my sock, like a pebble, it really bothers me. I don't however have any skin discoloration, nail changes or sweating. I have been taking Lyrica for almost 2 years and I imagine it's helping a bit, scared to know how I would feel if I stopped taking it. Tommorrow I am going for a second visit to a pain specialist. Don't know if he will want me to give it more time as I am still healing from the second surgery. I think we share a common frustration in that we don't officially have this disease, but then what is causing our pain. I just wanted to share my story with you and let you know that you are not alone. I hope that things are going better for you now that more time has passed since your injury. Good luck and take care.
Hey Mona, I have RSD in both feet n legs. One of the first problems a person runs into after an accident or whatever started their course of RSD is the fact their injury should be feeling better, when in fact, it hurts sometimes worse then when they initially hurt it!! Honestly in 7 years of poring over everything I can find, I have never heard of "a touch" of RSD. I'd say the best you can do is watch it close, my started with a little swelling and pain in my foot. Over the couse of about 3 months the edema or swelling increased, and by the 4th month I had a super sized leg, all red n purple, sweating, shiney and hurting. I went to the ER and they quick fed me 2 IV's full of anti biotics, thinking it was cellulitis, then they did an ultrasound to check for blood clots, about 4 days later, the whole process happened all over again. Finally about another 4 days, and the new resident mentioned something about RSD. My own doc never heard of it, and 3 doctors later I finally found one who diagnosed it. It is unreal that you have something so bad, that so many doctors know so little of. Hope this helps, and I pray that he doesn't have it
Yes, it is possible to have a mild case. I have what is classifed as a mild to moderate case in my left arm for the last 27 months. I have the pain, vasoconstriction problems, and topical changes (increased sweating and the hair on my RSD limb is darker and longer). I have full range of motion, no muscle atrophy, no swelling or discoloration. I forget to mention the insomnia, depression and many other limbic system dysfunction.
I have noticed subtle changes. I have developed some weakness in hands and recently noticed a slight tremor in my left hand. I do not allow anyone to touch me unless it is medically necessary. I ended up in the ER after an IME (indepedent medical exam) for my insurance company. And I no longer do PT, unless there is no touch involved. I did Tai Chi for 6 months and it was great for PT.
Last edited by FlaReta; 02-23-2010 at 03:26 PM.
I have recently had ligament repair surgery on my left wrist and I have been in a splint for 5 weeks now. In the past 10 days I am experiencing a similar thing, with "pain" under the splint. I have a very high pain tolerance and find it difficult to describe the sensation, perhaps the best is the aching sensation you experience after having ice on an area too long, just before it goes numb. Also, my hair is growing faster and darker, my skin has gone pale, and alternates between being shiny and dry to peeling. My arm muscles have wasted and mobility is majorly decreased, but this could be considered completely normal, considering the surgery I had.
My doctor is reluctant to diagnose RSD or CRPS as although im in discomfort, it isnt significant pain, although he has put me on Amitriptyline 25 mg and Digesic. The most frustrating aspect other than the sensation is the fact i cannot sleep, and being at university i cannot afford to be sleep deprived. Does anyone have any suggestions on managing this, and any other suggestions in general?
I too started with a broken foot, but the doctors I saw at the time had no thoughts that I had RSH. I progressively went from the tingling and electrical sensation in my foot to full blown pain in the ten years I have had this. I now have a battery on my hip with a pain stimualtor in my back that puts a tingling sensation into my foot to keep my circulation going and the pain at a tolerable level. This has spread to my other foot and leg. I never thought it would get this bad. I have been told innumerable times that if I had gotten proper treatment at the first I would not be this bad. Too late now.
Did you end up having it? So curious. My neurologist told me the exact same thing on Friday. I have a "minor case" in my hand with stiffness, swelling and shiny skin. Wondering if mine will progress to the severity that you find all over these message boards?? Thanks.
Hello, Jmombo, no I did not wind up RSD, thank god. I never had the shiny skin, nor the extreme pain. I had weird pain setting the foot down on the ground, and a strange tingling, and godawful swelling, but physical therapy for about 2 months helped enormously. After one sesson, the swelling was noticeably less, and the more I did the exercises at home, the better it got. No more tingling, or swelling. I still have no idea what made me swell up so bad in the cast. Water retention? I don't know, but that cast was one of the worst times of my life and I've thought since then that if I broke my other foot, to hell with a deformed foot, no cast.
Having said that, I will say, my podiatrist was an ahole. The timing of your reply is kind of crazy because I am going to a new podiatrist tomorrow. I STILL have pain on the side of my foot and I feel that the original reason for my broken foot was a peripheral neuropothy and a lack of movement in my left foot. I am hoping the guy tomorrow listens to me more than the podiatrist I saw when my foot was broken. I still can't believe how casually he threw out "slight case of RSD".
I am continually amazed by the health care professionals and physical therapists, who, when I say someone said I may have RSD, make an AWFUL cringing face. I dodged a bullet I think, but that face doesn't help.
I really hope you have luck with this. Above all, I would say, make sure your doctor is listening to you when you talk to him/her. It's so important.
I broke my 5th met on Oct 31, it took 11 weeks to heal (in a cast for 6, boot for the rest of it), but I also hurt the area by my cuboid bone (tendons, etc.) The physiotherapist threw out the "RSD" thing to me today too b/c my foot is tender there (it's very inflamed!), which scared the he** out of me, and I'm still a bit scared about it, but everything I've read about RSD doesn't fit, except for the pain I'm having (I think the tendon was torn by my cuboid bone as I rolled my ankle over on the side of my shoe, so my cuboid bone had a `wedge`under it as I rolled). Yes, it is quite painful, but it's very localized to that one specific area, has never moved. I did have sensitivity to touch (blankets) at one point, but that was before the fracture was totally healed and I couldn't handle the weight of the blanket on my foot, but could handle a lighter blanket... I can now handle any blanket. My foot turns a bit red after a shower, but that's normal when you're not using your foot too, and the color goes away within a minute or two.
I find it ironic that some sufferers of RSD get NO diagnosis when they should have, and other doctors or physios are throwing out RSD as a diagnosis without doing the proper workups.
What I also found ironic is that the physio who mentioned RSD to me also suggested that at some point we would do the hot/cold water alternating therapy to get the swelling down (which in my reading is one of the WORST things to do for RSD!).
I have gone through all the symptoms, don't have shiny skin, changed color, the only time the pain increases is if I walk too much on it (I can walk on it but it gets sore after awhile)... no sweating, no freezing, etc.
Good thing I know not to take that and believe it's true or I'd have a few sleepless nights!
That said ... if it does develop into RSD, I'll know where to come!
I am so sorry...but this....minor or slight case of RSD is bull crapppppppppppp...I am getting mad..9 years ago I was posting here just like you all...only I had a slight case...Yeah! Right....and you guys have only had a couple of blocks....What kind of doc am i going too..I have had well over 100 Blocks...I stopped counting at 89..just couldnt remember after that...I havent seen a primary doc since this and only go to urgent care when I am running a fever and if I am in bad with RSD I hold on till monday...No ER here....been there done that....ER doc even Dx RSD..but noooooooooooo, lets make her suffer...having one nerve block will NOT kill a person...well maybe it would if...la la la! not listening to self...lol, but in the end I tried and now NErve Blocks are part of the Journey and now on to next Chapter...SCS-ville... and opiate free...yay me!
Good luck on your journey and dont stop posting..it is a sanity saver....