I'm waiting to see a PM and get a bone scan to confirm my RSD. I've had ankle surgery and its been 3 months. I've had severe swelling, sharp burning pain, temp change, purplish sometimes, severe pain when PT does a massage of my foot. I suffer from bad insomnia and depression/anxiety.
__________________ Right ankle lateral ankle stabilization with ankle arthroscopy and debridement, curettage and microfracture of the lateral talar dome lesion. Possible RSD of right ankle
Anxiety and depression
Sounds like you have RSD. They can't alway tell with bone scan, but hang in there! If your Dr. Doesn't think you have it, find one that understands RSD!
My Dr. Put me on Elavil for pain, but it's also for depression, maybe that could help you with both things, and it helps me sleep
Will pray for you!!!
Sounds like you have RSD. They can't alway tell with bone scan, but hang in there! If your Dr. Doesn't think you have it, find one that understands RSD!
My Dr. Put me on Elavil for pain, but it's also for depression, maybe that could help you with both things, and it helps me sleep
Will pray for you!!!
My OS feels certain I have rsd so she put a request in for workercomp to approve PM dr and the bone scan. I take norco for pain right now, ambien for insomnia and meds for depression. Pain is real bad tonight thought.
__________________ Right ankle lateral ankle stabilization with ankle arthroscopy and debridement, curettage and microfracture of the lateral talar dome lesion. Possible RSD of right ankle
Anxiety and depression
The following user gives a hug of support to loki2012: Crano (12-23-2012)
I'm sure with you wanting to kind of stay away from this site means you are probably dealing with some depression over the RSD. I myself stayed away for awhile because I was feeling so depressed. My RSD started hitting me with a vengence! I was starting to have a hard time walking and PT was unbearable at my last session.
Please know that I am praying for you!!! I'm sorry that you are dealing with the burning pain again!!! Hang in there and again, you are not alone in this battle!!!Hope things will go in remission for you!
Last edited by moderator2; 12-24-2012 at 02:28 PM.
Again, I know how discouraging RSD can be and I have had my own bouts with depression over this crazy disease, but you are not alone in this battle!!! We are all here for each other.
Last edited by moderator2; 12-24-2012 at 02:27 PM.
Hi all,
I went to Dr. Friday and he says the bone isn't healing, he wants to start me on a bone stimulator? does RSD stop bones from healing? They rebroke my bone in my hand and straightened it and they put a plate on it. I started PT the same day as Surgery? But I guess all the PT isn't letting the bone to heal?
Fingers bend a little more? Pinky won't bend at all?
Hand flaring on and off? Burning pain better, stiffness and swelling on back of my hand worse!
Hopped I would be playing tennis by Feb. now I don't know?
Sorry I'm just venting!
The following user gives a hug of support to Crano: jewlz67 (01-07-2013)
I think it can have an effect on your bones because, if I remember correctly what I read, is that it can cause osteoporosis. I will keep praying for you. Let me know how you are doing.
Last edited by moderator2; 01-07-2013 at 06:21 PM.
I'll find out for sure if I have RSD on Friday. But several doctors now agree that this diagnosis seems correct.
I have osteoporosis in both legs from knees down but nowhere else. Everywhere else (non-RSD) has NORMAL bone density. I've had about 28 fractures just from limited weight bearing and standing (I haven't been able to run since I was a kid and I'm not dumb enough to test my bone strength by jumping etc). Actually it was the localized osteoporosis, hypersensitivity to touch, and burning and swelling that brought the diagnosis.
I think my pain is also different from many on this forum. I've had a DEEP burning pain for 10 years (after sx) but it only starts when I'm weight bearing; if I put no weight into my feet, they don't burn. But if I walk/stand a few minutes, they burn for the rest of the day even if I stop walking/standing.
Between this deep burning and the ease with which I fracture, I often use a wheelchair.
When someone touches my leg (it is more tolerable for ME to touch MY leg), it's not exactly like it is painful with a normal type of pain. Rather, it's nauseating and sends me into sympathetic hyper-drive such that I begin sweating immediately, and I have this fight or flight response. Anyone touching my leg is risking their life! I've never punched anyone ever unless they were lightly touching my leg. Carpet, beach sand, bedsheets, cold floors, certain socks, washcloths, are all intolerable and send me down the same path. It's more noxious than painful...hard to describe, really.
Then, recently, I got a terrible fare up beyond anything I'd experienced before. I didn't step wrong or anything! The pain was awful and spread throughout my foot and ankle, burning under my toes like a match was lit there, skin getting tight though not shiny, and my previous hypersensitivity (mentioned paragraph above) hit a WHOLE NEW LEVEL! Then after a few day the swelling began and would not stop and it felt like someone had taken a bat to my leg though there was no bruising. Compared to my less-affected leg, it would change the weirdest blue/dead/red/yellow colors!
This Monday, after two months of hell, it calmed down significantly almost just as fast as it had flared up. I've never seen anything like this before!! It's still significantly more sensitive than usual and feels 'bruised' and has atrophy and difficulty moving it, some match-under-toes burning still too, but I'm surprised it has even improved at all.
But I still don't think my kinds of pain sound like folks around here who seem to have it much worse. I'm grateful not to be so horribly afflicted.
Please keep in touch, those who are not as "painful"! I'd like to know more!!
GutsyGirl
The following user gives a hug of support to GutsyGirl: Crano (01-30-2013)
stage 3 pain subsides it is not as constant also depending on desensitization (stage 3 still gets the flares that are horrible, i.e. barometric pressure changes, over use, etc....) for me the worst are weather changes, they have me in bed for days.
Last edited by Administrator; 01-30-2013 at 06:53 PM.
Hi all,
I went to Dr. Friday and he says the bone isn't healing, he wants to start me on a bone stimulator? does RSD stop bones from healing? They rebroke my bone in my hand and straightened it and they put a plate on it. I started PT the same day as Surgery? But I guess all the PT isn't letting the bone to heal?
Fingers bend a little more? Pinky won't bend at all?
Hand flaring on and off? Burning pain better, stiffness and swelling on back of my hand worse!
Hopped I would be playing tennis by Feb. now I don't know?
Sorry I'm just venting!
Research shows us that 500-1500mg vitamin C daily after surgery or bone breaks reduces neurogenic inflammation and helps spead up healing, it also reduces chances of getting RSD/CRPS or having an existing CRPS spread due to new trauma.
I would take 1500mg for a couple months if it was me with a broken bone, specialy as it is not healing but please remember to always tell your doctor before starting any new medication or supplements.
be well.
_ Sandel
The Following User Says Thank You to Sandel For This Useful Post: Crano (01-31-2013)
I would say that your discriptions of your pain and the signs and symptoms you describe certainly do sound like CRPS to me, I am sory for your pain but it is better to get a diagnosis, learn all that you can about your condition because you are your own best advocate, you know what you are feeling and what makes it feel better, avoid ice and tramatic or invasive treatments, pace everything you do, try to advance your functions but pace and rest between, elevate those feet often and limit your walking times.. but try to increase your activitys gently and gradualy over time. Good luck.
_ Sandel @ RSD/CRPS R&D
I am new to this site, but NOT new to rsd. I got rsd following surgery in 1996. First was frozen shoulder (not diagnosed) but had pt to get range of motion. Then moved to other shoulder and more pt. Then had an injury to hand in 2001 and lost range of motion along with the swelling pain, etc. Became stiff like a board. Was diagnosed with rsd and started pt. tens unit. and densitization 7 days a week.
Eventually was able to get fingers to move like a claw and thats as far as they would go. It is the left hand so the go to about 4 oclock. Like yourself, they can't wrap around anything, and have little strength in that hand much less than the right hand, but that is OK.
Crano, I read all your posts before and after this surgery. I am used to the fingers being frozen and am SO grateful the severe pain is gone. It took time, but did get better. It did move down to both feet and legs-actually fully body. But I no longer have the electrical shocks thru by body or uncontolled spasms -jerks. I believe the high doses of neurotin 3200mg. contributed to that, but no way to know for sure. Crano, how are you doing now? Is the swelling going down any and how is your burning? I still have severe burning in my feet , but the burning in the hands has gone away. So, don't give up hope on your hand.
My latest challenge is my eyes. I'm afraid this nasty thing is in my eyes. Several times a day I have extreme burning, stinging, like razor blades, and extreme tearing. Can't even see when these spells hit me. Anyone have any experience or know of anyone with this? Thanks for listening. darlene
Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano
Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano
Darlene,
My fingers go to about 4 o'clock, except my pinky! My burning is there, but not unbearable! Top of my hand and fingers are still swollen, where the plate is on the broken finger swollen and purplish. I've had pain in both shoulders lately, hoping it not RSD!
Wow you have really been going thru a lot!!!
I'm so sorry your going thru that with your eyes! What does the Dr. Say? Have you read about anyone here with those symptoms? I sure wish there was a specialist in this that understood all of this and what to do
Thanks for listening! Will pray for you!
Crano
Crano, thank you for the reply. Hope your shoulders calm down and are OK. RSD has been called the hand-shoulder syndrome in the past. My RSD traveled from frozen shoulder to hand. and Mirror Type from one shoulder to the other- so just pay attention to your body.
One thing that you may ask your pt people- I was in pt 3 times a week too, and they had me desensitize my hand at home by getting several plastic bowls and putting cotton balls in one, sugar or coffee grounds in another, rice in another and so forth just different textures and run my hands thru. The hand was so sensitive to touch and this helped me grately to desensitize and get used to using it.
I haven't been to an eye Doc yet. Today is better for eyes than last couple of nights, thank you. There are docs out there that do understand this. I have had some good ones. I am no where near the pain of in the beginning back in the 90's. In fact, other than my eyes, it's just the burning pain in my feet. The high body temperature or freezing cold hands and feet. It seems either the feet are burning up or freezing cold. But that's part of this disorder.
I no longer have the electrical pain or shooting stabbing pain.
Hope this evening finds you well and able to sleep. darlene
Darlene, I have never experienced it in the eyes but I was just reading today about how it can affect your eyes. Somebody wrote on here before to research the sympathetic nervous system since that is what this disorder attacks. Google RSD and the sympathetic nervous system.
Been so busy I haven't shown up much here lately. But I'm so grateful for you guys.
Went to pain management doc over a week ago. HE WOULD NOT EVEN SEE ME! The "Nurse Practitioner" said he doesn't see patients unless they are having a procedure (epidural/ablation/nerve block, etc). Not only that, but she said I'd have to get another series of MRI's (I just had 6 x-rays and a CT scan!), a nerve conduction and EMG (had this done 2009 and nothing found, was in severe pain for 3 wks after, not doing it again; they can use results from 2009), and I had to FAIL Physical Therapy. Uhm...my hope is to SUCCEED at physical therapy, dip wad! :P to Nurse Practitioner.
So I learned absolutely NOTHING at that appointment and it was a waste of time. Then got stuck in a snowstorm driving home. Ugh.
So I'm trying to get another doctor to deal with the CRPS issue. I was entirely dissatisfied with that one. Not planning to go back.
Started Physical Therapy. Twice a week, but I've already been doing my own exercises at home. Feels like I am making very slow progress. Not having as many awful days as the last few months. But headaches almost daily. Gratefully, my PT doesn't seem interested in touching my legs a whole lot, for which I'm really grateful. Whew do I break out in a sweat when someone touches my legs!!
Gutsy Girl,
Try using rice, sand, etc to help with desensitation. I'm sorry your appointment went the way it did. Hopefully next doctor will be better.
. They can't alway tell with bone scan, but hang in there! If your Dr. Doesn't think you have it, find one that understands RSD!
Re: RSD diagnosis without pain 
Re: RSD diagnosis without pain 
