I have been recently diagnosed with CRPS/RSD I am going in tomorrow Monday Nov 1st for conseltation with Pain Management Doctor. What should I expect? My Neroulogist is mentioning a series of nerve blocks do they hurt? I have been diagnosed since Jun18th so I am very new! It is consumed my who left leg with foot.
Hi coosissypoo and welcome, I have had several sympathetic nerve blocks lumbar lower in the back for my left leg and foot and the stellate ganglion in my neck for my hand, i was very scared before my first one, but my doctor puts me to sleep and I feel nothing not even sore afterwards, for the ones for my leg and foot the one in my neck is a little tender for a couple days aterwards. But I am a big sissy and if I can do that anyone can.
as soon as I woke up I knew the difference my foot was warm ahhh and I was pain free but unfortunately they only last me about three days. try not to be to nervous ask your doctor if he will put you to sleep for the procedure, good luck.
The Following User Says Thank You to kelly4004 For This Useful Post: coosissypoo (11-01-2010)
Thank You You are an angle
Is there a difference between CRPS and RSD
"Remember this is not wriiten for pity but to let all know where I come from and I am scared to death."
I had an accident Aug21 2009, where I slipped on a wet surface and came down full force on both knees. I was rushed to the hosiptal and ended up with brused bone and contusions on both knees. I saw an ortopedic doc who performed injections in both knees for pain control. By March of 2010 I was unable to walk and had a total knee replacment performed on my left knee (I choosed the left one to have done first) Went through the surgery I guess ok ended up having blood transfusion on the third day post opt. From March through Jun 14th I was doing great walking without assistance climbing stairs etc. A very happy person. I was even able to work from home the whole time I was recovering. Then on Jun 15th I decided to try the comute to work. You see I work for CSC Computer Science Corporation as a Senior System Engineer Lead. I live in Newark De and commute to Philly. I took the train and then the bus to my office. Was in a lot of pain but scrugged it off as being normal for the comute and I wasn't using my cane any more. Then by the third day Jun 18th I was unable to walk at all and having burning, spikes, needles and oh please don't touch me....feeling from mid thigh all the way down my left leg. My right knee is not able to take the force of the weight. I went back to the ortho doc who stated he had no clue as to why I was in such sevear pain he took xrays and all looked fine. he suggested I may have over done it so we will wait for a couple of weeks to see if it resolves itself. 2 weeks later I was even worst with pain burning ripping spikes needles and crawling bugs feeling nothing and no one could touch my leg with out me screaming like a wet banjiee. LOL it sounds funny but not if you are the one feeling the pain. about a month after trying the ortho doc and having many test MRI, XRAYS ,and ultra sounds looking for infection or blood clots and all coming back ok. I ended up in the hospital with what they though was blood clot in lung or infection from my leg. At this time I couldn't breath and have very painful feelings in my left leg I screammed just to move it or raise it up to the hospital bed level. My leg turned beet red and very hot then it would turn purlish blueish and very cold. I spent over a week in the hospital and left with d ianostics of broncittus and not findings as to what was causing my symtoms in my leg. When I was released I had another appointment with the ortho doc who then refered my to a nerologist with possible RSD in Aug 2010. It is now late October and I have been on and still on several pain meds and one sezure med. Hydomorphine 2mg (daytime)and 8mg nite time. Licrya 3 times a day. It is now OCtobrer 31st as I am writting this I still am either in wheelchair or walker for short distances, in aqua therapy (I love the warm water) It is good therapy I know someday I will be able to walk again (now my left foot has rolled towards the left and I have no flection in it I am unable to bend or straighten the leg It torture at nite when you need to move. Nite time I take 8mg hydromorphine, amedtine, 2 tylodo PM extra Streath and 3 lidoderm patches I still wake and scream out in pain. Nite time is the worst for me. I just can't have anything touch my leg. I have learned to compensate using my right leg. Next step for me On November 1st I am see a Pain Management doctor. Yes Finally!!!!! God will release some of my pain. Now you see I have come from a very good area in my life to having it cut from under me in an instance. I will never be able to return the the job life I had due to the stress, meds and constant pain. I now have no life. Will I ever? What can I do to beat this I refuse to lie down and let it take me but I can't even crawl now. I am at my end I just want things back as they were before the surgery.
Sorry for the long letter I just wanted tell tell someone who understands. Scared to Death is there a support group out there?
The following user gives a hug of support to coosissypoo: calbeth (11-01-2010)
Hi coosissypoo, (i love your screen name by the way) I had surgery on my left foot in Dec 2009 to have a section of damaged nerve removed from my foot. This was my downfall. I like you had a job I loved and a life I miss, I was very active before bike riding long walks etc... But now I have a cane and sometimes feel like I want a wheel chair, My toes on my left foot no longer bend or flex my left foot has turned inward, and I can no longer lift or cross my left leg,Rsd spread up my entire left leg and is very painful in my hip/groin joint.
It has also spread to both of my hands, right hand has worse pain then left. Nights are hellish for me to. I am taking Vicodin 10/660 4xs a day for breakthrough pain neurotin 3xs a day I now wear 2 catapress patches for pain and take elavil at night, have stopped taking the restoril for sleep because the elavil makes me sleep. The nerve blocks did offer temporary relief as I said earlier, but not long enough to really help. So now I am going to do the spinal cord stimulator trial. I was suppose to have it done last tues, but as I mentioned before I am a big sissy and was in a full blown panic attack last tues and post poned it I saw my Dr. today and he eased alot of my fears, also my good friend just had the same procedure done 3 days ago and she said its not bad and told me not to be such a sissy lol so it has been rescheduled for next tues. I hope it offers some relief fingers crossed, I am so tired of all the meds. Oh and yes RSD and CRPS are one in the same I know theres crps I which i believe is crps with no known cause and crps II which is when they know what caused it like surgery, accident etc... let me know how your drs visit goes today. soft hugs.
Well had a good visit today with the Pain Mangement doctor. He stated he didn't know if my fall or the surgery caused the CRPS but it is diffently a nerve damaged. He explained how it is not the normal nerves but the ones behind the sean. Ones that control your heart pumping and ones that allow you to breath, I guess it is nerves that control all your muscles and organs. He is going to schedule me for a symthetic nerve block, thank god he said he would put me out. I explained to him how I can not lay on my stomach and he said they will work with me and we will get me on my side. He stated it would not be cured but should provide enough releif to allow me to be more aggessive at PT. I hope so and I will soon be able to walk flat footed and allow more weight on my left leg. Let me know how your appointment goes please!!!! I wish you all the luck and recovery!!.
Thanks, are you also an RSDer? I have had it hard but I am so thankful I have been given the opportunity to be blessed with my wonderful doctors who totally understand this dease. I wish that all RSDers would have the same treatment as I have experienced so far. There are alot out there a lot worst off then I am when it comes to doctors, especially when it is a WC case.
I only hope others will speak out about this awful unknown dease. I am thinking of posting to Opra to get it out to the world. That is what we need, understanding people, people who care and want to find relief from this dease.
Keep the postings coming LOL I am so Bad about this dease I am gona fight my way though it.
Hello I was diagnosed with RSD 4 yrs ago and i have been walking with a medical boot since then i am hoping i can go without it one day doctors tell me there is no cure for it but i am not sure. so what all have you tried
Hello Sbradshaw38 welcome
I am a newbie too, I am glad you posted to me I like hearing from folks. I was just diagnosed this past august 2010 so you can see I am brand new too RSD. Let me tell you I have 3 wonderful doctors (Orthpedic, Neurogist, and Pain intervention )and 2 wonderful PT persons. I go to Aqua therapy 3 times a week, i love it and it has helped me greatly with my movement and getting my balance back.My PT lady has gone to classes for Chronic Painmanagement and just learned some new technics. We are going to work on land tomorrow and try them out with me. I am also on medication I am taking Lycria 3 times aday that is helping me with the nerve explosions and the burning. I also am on Hydromorphin 2mg that I take twice a day and then hydromorphine 8 mg at night. then I am on an antidepressent I take at nite. Nite time is the worst for me. How about you?
I am having sympathetic Nerve block done on the 17th and another on the 1st of december. My doc tells me this is not a cure but should give me enough releif that we can be more aggressive in PT. I am just hoping to get my left leg straight and my foot flat on the ground so I can walk without assistance from wheelchair or walker.
You should see if you can go to Aqua Therapy -
What about you, what all have they tried with you?
Keep looking on the positive side I sure am and every little improvement is a mile stone of success to me.
The most important thing I think is to not give up. Keep our limbs moving no matter what or how painful. Cause we deal in pain everyday so what is a little more.
Sorry for the long rammbling I get carried away sometimes. Wondering if you have read the full message thread page 1 and page 2?
Well I finally did it I got the spinal cord trial yesterday, I was asleep for part of the procedure, and when they woke me up to test the leads I felt absolutely no pain!!
afterwards the rep from boston scientific programmed it I have one lead for my left foot and leg and one lead for my right hand. I cant believe I was so scared. However my back was very sore last night hard to get comfortable. this morning my back is a little tender but I havnt had to take any pain meds today first time since dec 2009. It works wonderful for my foot and leg I was actually able to stand barefoot on the floor and lifted up my good leg and all my weight on my bad foot and no pain, I actually cried I was so happy
The following user gives a hug of support to kelly4004: coosissypoo (11-10-2010)
Kelly I am so HAPPY!!!!!!! for you. I hope you have continues success. How long with it last before you have to have it replaced? I am going to ask my doctor about it also. Wonder why they put you through the blocks before testing you for the stemulator? Please keep me posted. I have my Sympathectic nerve blocks on the 17th and the 1st of Dec. My PT is working with me, we are tring new things to retrain the brain I will let you know how that goes. Lately I have been experiencing right hand tremors uncontrolable at times, is this part of RSD,? Also I am starting to have pain just above where the legs connect, not sure if this is RSD or not I have a call into my doctor but I never had issues with hips or back before.
Hey there, the tremors could be rsd but could also be a side affect of meds, the pain where your leg connects could also be rsd or could be from walking differently protecting your rsd foot. its so different for everyone who has it. I would definately mention these things to your doctor and see what he/she thinks. Myself I have lost the ability to bend or flex my toes and have also lost range of motion in my hip/groin area not able to cross that leg or flex it outward. My doctor believes that it is my rsd having spread. I know alot of drs use nerve blocks as a diagnostic tool, also in some cases serveral nerve blocks early on can put rsd in remission. Since the spinal cord stimulator is a invasive procedure they like to save it when all else has failed. I would be leary of a doctor who would jump straight to stimulator with out exhausting all other options first. hopefully you will get long lasting relief on the 17th but dont be discouraged if it only lasts 3to5 days. I have read alot of posts and it seems alot of people get relief for a week some people maybee only a few hours. I have read a very few posts of it lasting more than 3 or 4 weeks good luck to you let us know how it goes the 17th
The following user gives a hug of support to kelly4004: coosissypoo (11-11-2010)
The Following User Says Thank You to kelly4004 For This Useful Post: coosissypoo (11-11-2010)
Well it could mean that they didnt get it in the right spot, my dr told me that the warm feeling was a sign that it was the right spot, or it could mean that your rsd is what they call sympathetic independent pain as opposed to sympathetic maintained pain you can google the difference or it might not just work for you. Some doctors use the sympathetic blocks as a diagnostic test to see if it is rsd, but I believe most doctors are pulling away from that kind of belief. they may want to try again some people get several with more relief after each one, what does your doctor suggest?