Internal organ full body rsd
 

Does anyone else have internal rsd , I'm a union iron worker, atleast I was, 6 years ago was my last day .after a fall two years befor that in 2005. Broke back, shattered heel, dislocated compound fracture of hand. Rehabed for a year and made it back to work on a high amount of pain killers daily. Did that for about a year of missing weeks at a time cause of pain and feeling awful fatigue, sweats abdominal pain. Then one morning I couldn't get out of bed and the rsd set in to stage 2 , at that time I didn't no what was wrong with me, it took almost 3 years to find out what was wrong with me, trying to make this story short. But during that time. I was bed riddin, abdominal pain that was constant, no energy , cold sweats , lost all my muscle, I was an avid body builder for 12 years, if I ate I'd feel sick, I had a seizure inthe very beginning , after 3 years I saw swartzman and he said as soon as he saw me I have rsd and needed treatment to stop the progression. Since then I'm not any better, my routine is wake up on the couch, lay there all day feeling awful, the whole day I'm doing matinence on My body. I usally put my tense unit on my lower back, take my medicine,and drink coffe waiting for it to kick in, I feed the birds outside and watch them eat ,love the woodpeckers that come everyday. And after that I'm usally feeling exhausted, if I do any type of choir I get the cold sweats the feeling of being sick, extreme anxiety , my whole body is ice cold but I'm sweating like I'm hot. Really uncomfortable . It takes me an hour or more to recover. I get like this from doing dishes or vacuuming .anything that causes me to concentrate for more than a minute or soo will cause this to happen. My whole body is filled with inflammation .i have very low testosterone,low vitamin d,headaches,anxiety all the time,anything stressful will trigger this,I'm very anti social now,hate talking on the phone,long conversations make me uncomfortable,I can't focus enough to have a conversation .my looks went to hell,I was very good looking and worked hard on my body,not being conceded i worked very hard for it.now I'm 45 lbs heavier,face looks like a basketball,no muscles left,can't even do a sit-up anymore,I have a full gym in my basement with every type of gym equipment there is,and haven't used it in 6 years,my body breaks down with any activity .i never leave the house except for drs visits or to a store for my electronic ciggerettes and lotto tickets if my wife can't do it.if I do leave the house I won't be far from my house in case I get a flare up id be able to get home a lay down,I'm laying on my couch 23 hrs aday feeling crappy. I have no sex life anymore, not that I don't want one, I just don't have a sex drive anymore. It's very depressing. I started taking the ketamine spray but doesn't seem to help. It did one month and never did after that. I feel sick all day and have nothing to look forward to, I have a beautiful loving wife, she's a rn and just got he masters and in a practioner now, she will start practicing soon, that will help me a lot cause there's so many differnt things rsd suffers can try but the drs always say I don't think soo , they have no idea how much we suffer. There is soo much more but does anyone else have internal rsd. I'm totally disabled now btw

I have full body and internal RSD mine all started from foot surgery which wasnt caught for 4 years before it went full body and internal. By age 23 I was fully disabled. The organs it affects is my stomach, and bladder. It truly is a harsh disease and living with it I know is so hard. I have seen over 191 doctors in 13 states, Iam better then I was but still have my flares and basically sit around all day.

Iam sorry for what your going through, Iam glad you have someone who is there to help you and understand.

Danboy,
I can't begin to imagine how agonizing that must be for you.
I know your post was directed at fellow full body suffers, but I do feel for you.

Mine is spreading to left foot and who knows when & where it will go?

I'm glad for your wife to become a practioner. Please, I do hope she is able
to help you and spread awareness for reasearch, and at the very least
validation to get better treatments.

Hi Alaska ,thankyou for sharing.191 drs.not there yet but I know how you feel,it took 3 years to get diagnoised also.dont know how I made it thru,the abdominal pain and all the stomache issues had me bed riddin the while time,plus all my body parts were a mess .i wanted to know if you ever tried remeron for your stomache,this drug is a miracle drug for me,my stomache was soo bad for soo long.in agony every day.my syke dr told me this drug has something in it to help stomache too,I think it's a anti depression drug .dont get me wrong I still have problems with stomache.but it's manageable I can eat don't have that horrible pain and cramps bloating u name it,you know all about it.if you haven't tried it. And still having major problems .i hope you try it.befor I tried it 3 years ago I had gull bladder out gull stones removed,I didn't want to love I was in so much agony from the stomache , had rsd going on 7 years btw.i do have bladder problems,takes me 5 minutes to pee,if I try and vacume or do dishes I get cold sweats body is ice cold and it takes me 4 or 5 hrs to recover,my body is bloated,face is big up to 215 now ,use to be a body builder ,now I can't look at myself.take 120 mgs of methadone ,oxycodone when beefed 30mgs x2 down from 4 ,cause of workers comp,I use the ketamine spray,for 4 months,first month I was amazed at the progress,now it hasn't worked much,my anxiety is thru the roof ,anything stressful will cause it.hate it,I lay on tge couch 23 hrs aday ,with extreme fatigue ,just to mention a few,thanks for your response,and if you haven't tried remeron,get it immediately ,it works rite away,it gives u an appetite and you don't feel sick after eating.put you to sleep also take at night,15 mgs isn't enough need at 30 mgs to start ,good luck :)

Remeron
 

Hi Alaska ,thankyou for sharing.191 drs.not there yet but I know how you feel,it took 3 years to get diagnoised also.dont know how I made it thru,the abdominal pain and all the stomache issues had me bed riddin the while time,plus all my body parts were a mess .i wanted to know if you ever tried remeron for your stomache,this drug is a miracle drug for me,my stomache was soo bad for soo long.in agony every day.my syke dr told me this drug has something in it to help stomache too,I think it's a anti depression drug .dont get me wrong I still have problems with stomache.but it's manageable I can eat don't have that horrible pain and cramps bloating u name it,you know all about it.if you haven't tried it. And still having major problems .i hope you try it.befor I tried it 3 years ago I had gull bladder out gull stones removed,I didn't want to love I was in so much agony from the stomache , had rsd going on 7 years btw.i do have bladder problems,takes me 5 minutes to pee,if I try and vacume or do dishes I get cold sweats body is ice cold and it takes me 4 or 5 hrs to recover,my body is bloated,face is big up to 215 now ,use to be a body builder ,now I can't look at myself.take 120 mgs of methadone ,oxycodone when beefed 30mgs x2 down from 4 ,cause of workers comp,I use the ketamine spray,for 4 months,first month I was amazed at the progress,now it hasn't worked much,my anxiety is thru the roof ,anything stressful will cause it.hate it,I lay on tge couch 23 hrs aday ,with extreme fatigue ,just to mention a few,thanks for your response,and if you haven't tried remeron,get it immediately ,it works rite away,it gives u an appetite and you don't feel sick after eating.put you to sleep also take at night,15 mgs isn't enough need at 30 mgs to start ,good luck :)

Btw
 

i also wanted to tell you tgat if I go more than a day without this med I go rite back to major stomache problems ,I know how bad I felt without it and wanted you to feel better than you do know,that's if you aren't taking this or have taking it