Discussions By Condition: Skin conditions

Needing all the help I can get to understand RSD

Posted In: Skin conditions 4 Replies
  • Posted By: Anonymous
  • August 17, 2006
  • 02:56 AM

I would appreciate any information I can get regarding RSD. I had a surgery performed that is not healing on my foot. My dr. says that I may have RSD as I have alot of the symptoms of this as I am told. If anyone knows about this stuff I would really appreciate it. I was prescribed Elavil and Neurontin for this. I tried the nuerontin twice and it seemed not to help with the pain in my foot so I quit taking it. The pain is very real to me as my foot changes color, is still swollen(5 mos. later), gets hot inside out, my foot is extremely sensitive, and when I step down to try to walk I about go through the roof with pain. I get stabbing pains frequently like a knife being inserted and turned and then the pain will decrease. Please help with any info. if possible as this is about to drive me crazy with the pain. I would like to be able to walk again, but haven't been able to in the past 5 mos. My dr. is getting to recommend a pain clinic for me as again he thinks it is RSD. I wonder if it has something to do with the metal plate and pins I now have as a permanent edition to my foot. Thanks again.:confused:

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  • midnightstar 1960----------- I hear ya! I was diagnosed with RSD or otherwise known as CRPS quite a few months back...I unlike yourself did not have any surgery I just started having problems with my wrist...which spread to my hand up my arm to my shoulder....I have been to several specialists and have had RSD now for a year this October...when I was finally diagnosed I started...Stellate Gangolion blocks in my neck,,,I take Nortriptyline at night and another prescription during the day call Lyrica...the blocks are not comfortable but I think with the medication are helping...I am on my fourth series of shots and I think that things are a little more comfortable...I am now realizing that I am incapable of doing the things that I did once...my name is mystika...and I am sincerely sorry for how you must feel and have deep sympathies...You are not alone........
    Anonymous 42789 Replies
    • August 28, 2006
    • 05:50 AM
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  • I have RSD, nerve blocks have given me some relief. It's been a long road but the pain is now bearable. Praise the Lord!
    Anonymous 42789 Replies
    • September 4, 2006
    • 06:34 PM
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  • Hello all,I also am an RSD'r, I have been diagnosed for 3 years, I have found a ton of information and support from a number of websites, specifically, I would suggest taking a look at www.rsdhope.org. One of the best things I was able to come across on their site was "A Letter to Family/Friends of an RSD Patient" and "The Spoon Theory" Each of these have help me, and my family come to better understand alot of what still seems unbelievible, if not unconceivible life under less the good conditions. In closing I was on Nuerontin and now have been moved to Lyrica. They are both used for Diebetic Neropothy (Pardon, my spelling).... but, while they don't directly effect you like a opiod pain medication, it does a good deal to help deal with the misfiring of the effective nerves that have the damage. Mine has been a result of a bad surgery.I happened to have been to my Comprehensive Pain Management Doc just today, and he mentioned a new group/site and is going to provide their web address in the next couple of days. Key to dealing with this (for me) has been INFORMATION for not only me, but for the family and friends arround me. I have been on Duragesic for 3 years, and use Oxycodone for break thru pain. In addition, I had a spinal cord stimulator implant done in Dec 03, if they offer you a trial, and it does for you what I had experienced with mine, you may wish to cancel the appointment for the removal of the trial (external) device. I could hardly believe they could do a trial and take it away, sending me back to the intolerable level of pain I had prior to the trial, to wait for nearly another month to have a permanent one implanted. Not secondary to INFORMATION, is having a GOOD and well informed Pain Management Doctor, whom has familiarized themselves with RSD, and isn't going to downplay things to attempt to convience you, that this is just in your head. (won't comment on wanting to do some head shrinking on them folks...) But I digress....Feel free to drop me information or share your situation.Friends are the Family we choose as our own..... and RSDr's can never find themselves with too many folks who are attempting or have worked to understand this difficult condition.I wish you all well....Peace.Shadowtraker
    Anonymous 42789 Replies
    • September 15, 2006
    • 11:00 PM
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  • Hi to all,This is my first reply.....so I hope I am doing this right.I too am a fellow RSD'r , took 23 doctors and two years for a diagnosis and by then of course ........it had spread from my right calf to both legs and up to my right forearm. The most important thing that you must do that was mentioned is educate yourself. The problem is the lack of knowledge from the medical community. I am finding that we as patients are having to educate our doctors. We have to stand up, take charge and if something doesn't sound right go with your gut instinct and don't do it. Sorry if I sound bitter, but after 20 something doctors telling me to just cope, or that I'm just depressed, or that I'm just overworked kinda gets to ya... We must get our story's out there and be heard. Another great website is www.forgrace.org there you can post your story. Mine is #9Also, like Shadowtraker suggested at www.RSDhope.org there you will find a quilt project for RSD to spread the word. Beautiful Idea.Pratt, mystika,Shadowtraker,midnightstar1960.....you are all in my thoughts!Also the next step Shadowtraker my doc wants to put in a SCS and I'm not sure but you sound so upbeat about it......could you let me know?Have a pain free day!Busymom069
    Busymom069 1 Replies
    • September 25, 2006
    • 05:31 AM
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