Re: anyone with rsd, that could talk to me?
Re: anyone with rsd, that could talk to me?
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Posted by ke o'brien
on March 12, 2000 at 20:15:30:
In Reply to: Re: anyone with rsd, that could talk to me? posted by Tammy D on January 11, 2000 at 20:38:34:
: : : : please will someone with rsd/crps talk to me i talk to my wife but she can understand so much and i really would like to talk to anyone with this i have it in both legs myright ribs and my right arm i am on durogesic patches but they are like taking asprin for a migrain please answer or e mail me
: : : : I also suffer from rsd in my right leg (mainly my knee), my left arm, from my shoulder to my fingertips, and starting in my right elbow...the pain is anything from a burning, tearing, searing pain to throbbing pain in my entire limb....I was never able to get my ex-husband to understand what I was going
: through, and most of the time he didn't seem to believe what kind of pain I was in...he also was constantly yelling at me for doing things that would aggrevate my condition ...I tried to explain to him, that if I stopped doing things I enjoyed, because of the pain, then I might just as well end it, because I was
: determined not to let it stop me...the guy I have been seeing for the past 2 and 1/2 years has no idea of what I am going through, and I have no intention of ever telling him. He knows that my leg and arm hurt sometimes, but when it is really bad, I just stay away and make excuses about being busy. Be
: very thankful that you have someone you can talk to, even though she may not understand rsd fully, I'm sure she cares and is willing to help you deal with it...you are SO lucky!!!!! Have faith and if helps, I always remind myself to think of others who are worse off than I am...
: Depression is a big part of RSD...I was told by my orthopedic surgeon and my pain clinic Dr, that RSD sends out the same endorphins for the pain, that have been found to also be responsible for depression...I know sometimes it seems overwhelming, and you don't think anyone else understands, but
: hold on to your wife and thank her for being supportive.....That's the most you can ask for, and some of us don't even have that...
: Good luck and I guess the most important advise I could ever give anyone suffering from this disease, (after 6 years of dealing with it) is pace yourself...learn the warning signals, and when the pain starts to rear up, start your pain management THEN...don't wait until it is unbearable, as my Dr says, then is
: too late...
:from firstname.lastname@example.org on 3/11/00--I have been a Registered Nurse for 36 years, always working at least part-time and usually full-time. I had bone cancer in right upper humerus approx. 15 years ago which was surgically removed and with extensive PT for 2 years regained full strength and use. In 8/6/99 I had reoccurence of the bone tumor and had excision of the tumor (approx. upper 2/3 of humerus, with a rod down remaining humerus and surgical cement filling the upper 2/3 of the humerus where the tumor was removed). I had much pain and instability of the right shoulder with extensive communication between PT and orthopedic surgein. On x-rey, the Drs. thought they saw what were tiny fragments of surgical cement outside the oeriostium of the humerus. I was scheduled for arthroscopic removal of GLUE FRAGMENTS on 9/23/99. THAT MORNING getting ready to go for the outpatient proceedure I commented to my mother that it fell like "an elephant had been standing on the palm of mt hand." The bones ached and throbbed. After the arthroscopy, which turned into a 5- hour repair of the shoulder the pain increased in intensity and scope, involving my fingers, hand, and wrist. By the way, the "surprize" 5-hour surgery resulted when the arthroscopy revealed that the Chips of surgical cement were actually remenants of my rotator cuff which was apparently damaged by the original surgery 15 years ago. In addition, a traditional repair is not possible (transplant of muscle tissue from otger body oarts to the area to "remake a rotator cuff" because the top 2/3 of the humerus is surgical cement with no blood supply to nourish any transplanted muscle tissue. As though all of that was not enough, I went for my post-op office visit two weeks later and reported right hand pain as severe and crushing to the point of inability to flex or extend any of the muscles. Dr. nicely said "we didn't do anything to your hand. I told him I refused to have post-op exam or discuss anything with me until he could do something about my hand. He called a pain clinic Dr/ I was seeing from first surgery and made apt. for "a block" the next day. By that time my hand was greater than 3 times it's usual size, was greyish-blue in color with purple-colored creases in hand and fingers. After routine assessment did a stellate sympathetic nerve block, which hurt like hell, but not worse than my hand. I had a blocl every week for at least 8 weeks (whatever the max. dose is) and was only slightly better by the end, but the treatment apparently is a type of slow-release med. to the sympathetic neurons governing my right hand. I now,approx. 3 monyhs since last injection have virtually NO PAIN in my hand. I continue to have stiffness and lack of full ranfe of motion due to contractures. For other pain which is surgically-related, but considered chronic in nature, I continue with the same pain-clinic Dr. who sees me every month or before if needed. He has had to increase my dose of Fentanyl patch four times, and orders Norco for break-through pain. Norco does not help one bit, but the (INCREASED-DOSE AS NEEDED) Fentanyl patch and my Tens unit keep me pretty comfprtable. Thank God for my assertiveness to DEMAND treatment for something I had never heard of in 36 tears of Nursing, but something that I knew was not a normal post-op symptom of shoulder surgery. Thank you to every devine being for bringing my pain-clinic Dr.W into my life. I would recommend that every RSD patient seek treatment with a major pain clinic and request info. on a stellate sympathetic ganglion block. If the DR. decides it is right for you, do not expect immediate relief. That's not how it works. Good luck!!