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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello everyone,
Sooooooooo glad I found this site. Little bit about me, I'm 33 yrs old and had severed tendons and nerves in left hand back in May 2007. Had surgery 8 days later. Did OT for 18 weeks. Was dx with rsd in Aug. Started treatmen for it Oct. 25. I take 175mg of lyrica ( not helping ) and I take Cardura ( high blood pressure med ) Don't have high blood pressure, but have to take it to help with circulation and blood flow to my hand and arm. Since this injury I get worse and worse each day. The pain is now in my shoulder and arm pit. Can't stand it. My hand is SIGNIFICANTLY smaller and continues to shrink. It is also discolored and constantly COLD. I wear a glove all the time. I'm like Michael Jackson ha ha ha. My Dr. wants me to have a dorsal column stimulator in January. I think I will try this. What else do I have to loose at this point. It is very difficult for me to work. But I have to. I have two daughters 15, 13. to take care of. Well just wanted to share my story with you all. I'm sorrry we have this awful dx.. What a hand we were dealt. Any thoughts or suggestions I'm open to. Thank for listening. sorry for type errors. I struggle with that also. Hope everyone has a pain free day.
Jousymol have you tried Lyrica? You right about being persistent, don't never give up. Something else I forgot to mention, also have them state how your medications efffect you and how they effect you doing your job. Also keep all doctors appts and try to do whatever they suggest they might help you improve your condition. This is another thing that SS is looking for and that is what my doctor stated in his letter to SS.
No, Ive never heard or being mentioned of Lyrica. In a matter of fact even thou I have liver damage, I am willing to keep trying different medications and exaust every non invasive treatments before I finally go for the block. I know its inevitable for me to avoid a block if everything else fails, but I want to try everything else first.

This is one question thats very important for me. How do you get your doctors to write on a lettert or on your records all your symptoms and side effects and your restrictions and limitations ? Ive had this issue that when I see a doctor they tell me that my condition is chronic, that there is no chance to correct it, that not even surgery, etc, but when I request copy of their records none of those things are put in the record it self. They just tell me, but dont write it. They would write something in the records like, CRPS, Post Traumatic Arthrosis, DJD, Chronic Pain, Osteoarthritis, etc, but nothing else.

(Sorry for the following long example-explanation)

I even asked one of the doctors I saw several times that if he could give me a paper or a letter in writting with everything that he just diagnosed me and told me in his office in one of the visits, and he got really defensive and said " Why do you need me to write it on a paper ? I cant do that. All I can write down is Chronic Pain on the left foot and ankle." I got so mad because of this attitude but tried to remain calmed and reply to him..." Well I need all your professional medical opinions and diagnoses that you just told me and my wife in your office in writting, so I can take it to my main attending physician so he can decide what to do next in respect to treatments and my conditions". He was getting more mad because of my insisting request of all of this on writting and he told me, " All I can do is write down Chronic Pain on left foot and ankle and that based on Bonescan the patient have Arthrosis". I was so mad I told him that why if he just told me on his office that I have (CRPS, that I have DJD, degenerative arthrosis, post traumatic arthrosis, a possible unhealed fracture on my left foot and ankle,that I have osteoarthritis all over my middle foot and ankle, that this was not curable, there nothing could be done not even surgery and that the condition on my foot was permanent and that it constantly progress to worst, that it was a disabling condition, that I should not work like this or it will get worst, that I should continue to use crutches or a cane to walk, that I shouldnt stand or walk for long periods of time, that I should have my legs elevated constantly because all the constant swelling, etc.. )That why he would only want to write down such a vague and lazy diagnose, after all this important and severe and chronic conditions and restrictions and limitation and things he just told me and diagnosed me a few minutes back in his office ? He said, " I cant write all that." He then went back to his office and after 5 minutes came back and handed me a paper that says that I had CRPS, Chronic Pain on left foot and ankle, Degenerative Arthrosis , please keep off work. I was still so mad, but I saw I wasnt going to get anything else from him so I took it and left the place.

I had very similar situations with different doctors that are afraid of giving me a letter or to put on the record everything thats affecting me and all of my conditions, restrictions and limitations. Why is that ? How is it that you achieve getting everything documented in writting ? I always go there with a calm attitude and very respectfull. What should I do ?......





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