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| | (1 recommendation so far) | Message 1 of 14 in Discussion |
| From:  mercurybebe (Original Message) | Sent: 1/3/2005 5:40 AM |
Hi everyone...my name is Rebecca and I have spent a lot of time reading all of these messages. There is so much amazing information and I am so grateful to have found this site. I just got out of the ER three hours ago. Had to have a shot of Dilaudid again just to get some relief from this awful pain. my story, as briefly as I can... I had a breast reduction in June 2003. Things went wrong on my right side immediately. I had far too much post-op pain and after 3 weeks my plastic surgeon called me a drug addict and dismissed me. I was hospitalized a week later with "cellulitis" and that was the first of about 16 hospitalizations (ranging from 3-10 days) in 10 months. Throughout this time I was in severe pain and on many different pain meds, from Neurontin to MS Contin. No one could figure out what was wrong with my right breast and the weird discoloration directly below it (which has never been painful). I was called a drug addict by more doctors than I care to think about, and was even labeled that by my primary care doctor of 4 years when no one could figure things out.  In May of 2004 I went off all narcotics cold turkey and luckily it coincided with what was the beginning of a remission. At the same time I finally met with a neurologist who diagnosed me with CRPD. He said he had never seen it in a breast, but otherwise it was clearly the problem. I live in a small city in NY and I think no one had a clue what the deal was...which is why it took so long to get the diagnosis. I went through the summer and fall in a great remission, using the neurontin, lidoderm patches and tramadol. That may sound like a lot, but for me, not being on narcotics was like being free!!! Mid-November and everything changed. The searing pain was back and I was in the ER. I missed about a week of work and lost my job. Nothing was helping my pain and finally they gave me Lortab and I had been managing with that until about a week ago when my new primary doctor had to add Duragesic and Percoset. I am waiting to get in with a pain management doctor, for some reason it is taking FOREVER. I am desperate to try the nerve block, even though it has now been 19 months since my surgery. Hopefully I will be seeing the PM doctor soon since my primary care doc is clueless and the people at the ER still think I am a drug addict or something. It is amazing how LITTLE people know about CRPD, at least in Albany NY. Have any of you faced this kind of problem??? I am so frustrated that I feel like I cry all the time (I am on anti-depressants too) and I think this is hopeless. I haven't been able to work, I have a 5 yr old daughter and I am so scared of being on narcotics again and going through the hell I did with all the labeling the first time. *I* never felt addicted but it was amazing how so many people told me I was. Luckily I have a good family and support...but still. Anyway...I am sorry to have written so much, but I just needed to reach out. I feel so alone in this and I dont know if I have the strength to get through this flare...I really thought it was over and I was going to be okay. Thanks again for reading.... |
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| | (1 recommendation so far) | Message 2 of 14 in Discussion |
| | From: 32mel5 | Sent: 1/3/2005 7:19 AM |
belive me your not along i have had rsd for over 1 year in my wrist and on
fridy drs told me it has moved to my left leg so we all here know and
understand just what you are going through all my experinces on this group
they are all the best and very supportive welcome to the group melanie
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mercurybebe First off welcome to our little family.We are a small group that shows alot of suppot.I'm sorry that someone else has to deal with this problwem I really am.I'm sorry that you had to go through all of those insults before they got it right.Trust me we have all been called lair and drug adicts or drug seekers wether it was true or not.I'm sorry it taking you so long to get a pain docs it always takes that long but believe me once you get one it will be a great help.They can try all sorts of treatments that your doctor doesn't even know about with treatments and meds hopeful they will be able to make some progress in your condition.Conditoon like ours aren't that well known even in the medical feild which is always a surprise to me Don't ever mind writing alot we always do take care and if we can be of any help to you let us know love always mirage |
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Thank you both for your kind responses... I am feeling better today. My primary doc put me on the Duragesic 75 patch yesterday and while I am really, really itchy still (this always happens to me with narcotics) my breast is FINALLY hurting less. I haven't had to use any breakthrough meds yet and I dont feel terribly foggy *yet*. I was even able to go to both social services and social security this morning to get applications for help. I felt quite accomplished! In better news, I have my appointment with the PM doc! It is for the 13th and I am hoping he can go right to the nerve blocks from there...I want OFF these narcotics...I must look ridiculous constantly itching myself, LOL. Have any of you had to get SSI or Disability because of RSD? It limits my use of my right arm and side but I am figuring they will find a way to deny me because I could do *some* kind of work left handed...it is more being on narcotics that clouds my thinking and stuff. Anyway...thanks again for welcoming me. I am sorry we've met under these conditions but I am so grateful to have found you! |
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Hi Rebecca, I am so sorry to hear about all the B.S. you have had to go through just to get a diagnosis like this. I am just recently diagnosed as well. I received nerve damage in my left leg while receiving an epidural during childbirth this Sept. with my daughter. I hope you start getting results with your P.M doctor and he treats you well. I will be thinking of you. If you ever need to talk i am here. I don't know alot about it since i am new but would love to just chat. I know what it's ike to just feel ingulfed in these disease. Hannah |
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Hey Ms Rebecca. I just wanted to let cha know that i totally understand and feel what u have been thru...i have been thru a very simlar experance....i haven't been here laong either as a mamber...i been real ill....but i too was told i was a drug additic and laughed at behind my back...i could hear the nurses while the Dr. would order me a dermol pain shot.......the shots starting off a couple of times a month n finally a daily shot...i finaly got in to a pain care DR amd had a bone scan n nerve bloack which diongnes me right then...but by that time i had lost an arn n wrist n fingers that are twisted up...then i spent 2 years in bed ..un able to move due to the pain level...by the time i actualy did get dignosed i had lost so much..n the Dr who trested this diease told me i was one of the worse pt that had even walked thru his doors..' it had been over 9 yrs...then 1996 is when i was finally as i mentioned dgnosed correctly...see i got sent to a nerologist cuz i had black outs...they were due to pain...n when he seen my hand he was floored by the look og it...he is the one who told me to please have my primary Dr look into it.ASAP...' he did n i went to the pain care and had as i said a bone scan n a nerve block...the 1st of 12...and they didnt do anything at all...n each time i had 1 i was rushed upstairs to a instay hostpial visit and put on a morphine drip for at least a week...they tried in hosptial aggresstive PT...that was a complelt joke..i im a stage 4 and i had a infusion morphine/clonidene pump implanted...plus i take7 other kinds of mes on top of that....i fought the meds....i fought the fact of a diesase i didnt want...but...all i did was hurt myself in the process...the RSD is now full body...i am now in a wheel chair...' i am 47...with 7 grown younguns except 3 teens at home and 9 gran youngins...' i do all i can for myself...i guess when yr born with a will to fight...it usually is there even when ya feel so down like it left...it will always in my case reservce...' God is my soul strength..'i would love to get to know ya...and i am veyr happy to meet ya...as far as SSDI....i just got my award letter yesterday...i applies in june...so yes ma'am you certainly can get it...hope to get to know ya ...God Bless ya sugar...soft hugs southernrain... .(ms susie) |
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I am new to this site as well, but not so new to RSD. I can understand your complaints with the narcotics, because I too have the itchy, rash reactions to all of them! Have you not had any blocks yet? I am not on SSi, however I know many RSD'ers who are, they recently are accepting RSD as a real "disability" making it easier for people like us to apply and get accepted. I would like to chat with you, when are you online? battletheburn |
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Do not feel bad about saying too much here.. That is not ever a prablem. SO happy that you could reach out too us.. SO Sorry it took me so long,, I just got my new computer.. SO Am able too be here more.. Itching n scratching from duregisic is kind of normal keep moving the patches n useing vitamin E oil on places where patches had been.. will help in several ways U will discover.. I get dissability from other things not RSD,,,, that should be n will be coming loose tho soon,,, maybe not soon enough for all the suffers out there.RSd,, causes many affects in our life that are very unwelcome to all that are involved.. So keep letting us know how things are going.. Wish I had more answers for you all.. annie |
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WOWOOW<,,,,,,,, I am so sorry,,, that we all have this unwelcome invader. WOWOW,,,, glad too have you in our family,,, ALL OF YOU!!!!! Sometimes,,, we get sooo down physically,,, we have a hard time moving,,, I know that I do alot with everything I am suffering,, reason I can be soo slow in answering,, or getting back,,, I do not even get online,, when I am that bad,,, I get so sensitive too lites,,, heat n cold,, n everything... Please do not hesitate too get hold of me,,, needing someone too talk too or just lift in spirits I am signed in when I am online,, N always be happy too chat,, too get everyone into chat will be great... I will also be going into hospital,, for having a morphine pump put in, I am waiting on the scheduling of then.. I have yahoo messengers which I can sign into with my cell phone,, I have not been able too sign into with msn messsanger yet.. So ad me,,, [email protected],,,, or [email protected],,,, I will be happy too chat on messenger while I in hospital... Just pleezzz remember it is slow typing on cell phone in answering is alll THANKS annie HAPPY HAPPY EASTER!!!!!!!!!!! |
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{{{MERC}}}}}}} welcome,,,, wowow,,, Glad you found the site,,, If there are any questions pleez ,,,,, add me too your msn messanger I will be happy too talk tooyou any time,,, when I am online.. I am usually on line alot during the day,, late in the nite,,, like early morning,,, weather has me jumping like it is been ....... Making for high pain levels.... So sad,,, we have too deal with such a unwelcome guest...... Let me know when ever Thanks Sorry,, I am soo slow!!!! annie |
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Hi Rebecca; I too am new here and had the same go around as you trying to find out what was the problem. I had the shingles in my right hand and it has left me with little use and the stiffness and pain. I am not currently on a lot of pain meds like I was after I came out of the hospital the last time. I know so little about this.. I do know that the last few days have been terrible.. I never know if a new pain in another part of my body is from the RSD or just plain old age. I really feel for you and the problems and with a small child to care for also. It certainly is a scarey affliction. I don't know if I am in remission or not as I do not have the severe pain that I had the last time I went to the hospital. I was to the emergency room numerous times and to several docs and in and out of the hospital before finally being diagnosed. Some docs actually just plain admitted they didn't know the problem. We all know the feeling of being frustrated about it.Some how we are going to have to make docs more aware of the problem. Just hang in there. My prayers are with you also as with every one else that has this terrible affliction.  |
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{{{{{{LADYBUG}}}}}}}}}} That is one thing that is always hard for us.. Welcome too the group,,,,, feel free too join in,,, Sure glad you found us... Do not be afraid too post or ask questions.. We are all going thru this It is good that we are not alone,,, we can share things.. LEt Me know if I can help,,,,, RSD,,,, is a hard one..... Give me a holler on msn or yahoo either way.... WELCOME dear one... Hope we can share.... annie |
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Hey all I was wondring if any one has taken methadone for there R.S.D? I was on morthen and it wasnt helping me so my doctor switched me to methadone (while waiting for my insurance to approve other treatments) and its working well but im getting some bad side effect like sweeting super bad to the point of soaking through my shirts. then theres the iching its. killing me! was just wondring if any one else had these same effects while on it. Thanks for the help |
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{{{{{{{{ CC}}}}}}Yes,,,, I been on meth also,,,, I am going in for morphine pump,,, this coming Wed.. The morphine has done more for me,,,, I know the sweats,,, n I could not keep anything down on my tummy while taking it tho.. None at all.. So,,, What may work for one,,, will not work for another... We are all different.. Just as the injuries are so different for each of us.. Feel free too contact me,,, [email protected].,,,, Chat anytime.. <,,,, glad you found us here do not be afraid too post vent,,, check all the boards out,, there are alot of information on here... Please know that you are not alone,, n certainly not alone in being treated ,, n having troubles with treatments. chats soon annie |
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