What does this mean?

I kind of understand "Full Body", yet, if I told any doctor that, they'd look at me like I'm a "Malingerer".
Organ involvement?
I've just plain never heard of that, besides feeling nauseated, constipated, or the opposite, and just feeling "ill" in my belly.....

Maybe Ya'll could explain to me better, so that I may know better, because I have so many kinds of "weirdness" going on inside me.
As for the "Full Body", it seems that they (doctors) don't like to hear that, they'd rather hear where it IS, rather than just "All over"., like say
My hands, arms, shoulders, neck, head, then down my chest, my upper/lower legs and especially feets.
Yet, I have no pelvic involvement, is this a Female thing?
Well I can't talk about my "pelvic involvement, OK?"

Anyways,
So there's a few spots that Don't hurt.
like my belly, my booty (gettin' bigger) Hah! And, my um, well, that's about it.!
So,
I can't just go to a new doc, and say, I got RSD everywhere, full body!
That don't work!
I can say my spine, my arms, hands. My legs, especially as we get closer to my feets. Oh, don't ferget me Head!
Ouchy!
Yea.

But, there is some places I Did NOT mention!
And, they pick up on that!

So, we can't just walk in and say full body.
I don't believe it, and neither do they. (I do believe that we All hurt, All over sometimes, but, with some meds, that all around pain, does go away).
I hope it does for ya'll, anyway!

Pete
Asb

Can someone explain to me what "Organ Involvement" might be?
I feel mighty sick, lots of the time.. Is that it?

xo

You named every part of your body so probably what you're thinking is correct for the term full body. You are full body. Anywhere on the body is never just a female thing either. I have known a couple of guys who had it in the pelvic region.

Of course they grab onto that right away! Most docs, as we well know, don't know carp about rsd anyway. They're always ready to jump on the fact that this or that didn't get named. *rolls eyes* Whatever!

As for organs, I don't think I have any involved. I suspect I might have it in my bladder but just not bad enough to cause me a huge problem like others who have bladder involvement do.

From my understanding, it's the same for organs as for the body. Pain, possibly burning, spasms. I've known a couple of women who had it in the stomach and couldn't eat at all. If they tried, they got really sick and couldn't keep any food down. Docs test for organ involvement the same as with other body parts. Run two tons of tests and rule out anything else that could be wrong, such as an ulcer or other ailment.

Then, there are the meds. They take a toll on the stomach at some point. This could be what is making you feel icky a lot. Could possibly be an ulcer. Could probably be many other things I can't even think of. LOL The only way you can find out what is causing you to feel so icky is to go to the doc and maybe have some tests done if the doc feels they are needed. :-) Sorry you're feeling icky. I know the feeling!

Hope this helps answer your questions.

Hugs,

Karen

you are describing full body .. i basicly have rsd from the top of head to my toes. eyes neck face you get the pic. now as far as organs. my heart was the first to act up.. and i used to call it heart burn i was a dumb 16 yr old and thought that is what it was. but i get horrible chest pain like a heart attack and my resting heart rate is never even with meds under 120bpm and can go higher than 200+ .. then came the asthma.. i was an athlete my whole life. never any problems. then came the pelvic and female organ issues and this all happen after my first c section. i also have interstitial cystics , pelvic pain , endomitritis , kidney problems , bladder that is frozen and doesnt contract . the cluster headaches. IBS , and essential tremors. and TMJ eyes issues. teeth pain when there not infected. stomach issues. .. had to have my appendix out in december . my right overy no longer works.


I AM 27 YEARS OLD AND SICKER THAN MY 70+GRANDPARENTS WHICH ONE HAVE BREAST CANCER!!! but i do have odd pains in the orgnas, liek i can feel cold things goin into my bladder when they do test. cant hold more then 400cc of liquid in the bladder and have to push to pee no matter what. this is what organ invlvevment is and classified as far as i have been told and see in my experince.

not to mention that my sympathic and autonomaic is so screwed up my allergie list is at least 20 plus things and will also grow i can take something once and the next time it can damn near kill me ...

hope that this helped

U poor sweet girl can't even imagine what u are going thru// I know my mother who is 71 asked me the other day why I am so sick all the time.?:~( I have had 9 major surgeries or lost track after 9 th one. 2 vocal cord surgeries, 2 laparoscopies, gall bladder out, right ovary removed, full total hysterectomy, knee surgery 2 times. I have allergies to oak, timothy grass and other things lactose intolerant, high blood pressure for 15 years and taking hormones for 15 years. and have worked shift work 12 hour days for 20+ yrs. i always wonder why I am so lucky.. But it beats the alternative.

What's Full Body & Organ Involvement?

http://www.rsdrx.com/rsdpuz4.0/puz_34.htm

http://robertgschwartz.homestead.com...nalDental.html

http://www.rsdrx.com/rsdpuz4.0/puz_127.htm

http://en.wikipedia.org/wiki/Talk:Co..._pain_syndrome

Hi Pete,
I had RSD for about 8 years when I saw a new neurologist, and after more tests, he said I had 'generalized' or full body RSD. That's basically both hands, both arms and shoulders, both feet and legs. neck, spine, head, face hears, groin area, all my skin, inclluding top of my head, the red itchy dots all over head. They go in the outer part of both ears and just inside my nose.
Because RSD is an autonomical disorder, which means all organs that are involuntary.
RSD can involve, the heart, lungs, kidneys, bladder, blood pressure, circulations, eyes, mouth. I personally have involvement in my heart-rythym, lungs, chronic inflammation, colon diverticulitis, skin red dots, skin leisons, sweating, and ice cold feet and hands at times to the bone. Bone loss is an issue with us, especially our teeth, so it's important our dentist is on board and willing to read about RSD. I take antibiotics the day of my cleaning and check up. I also use the nitrous oxide mask to relax. Didn't before RSD, but why get nervous about it. We usually have dry mouth from meds, so that is not good for keeping our bones in our mouth. I had a root canal by another dentist and he didn't tell me he gave me a shot of ephenephrine and I had to get his attention( my mouth was wired open) because I thought I was going to have a heart attack. Remember Dr. H on the puzzles mentioned ephenephrine. They give that to you to make the anethestic last longer. I keep a warning on that in my billfold, as it really can induce a heart attack.
Hope this helps some. had this stuff 13 years. your friend, loretta

Isn't it amazing? No matter what we try to do to explain it to our friends and loved ones, they always seem to "forget" why we are ill. I found a good article several years ago that I shared, and only one person caught on.

Hang in there, and keep trying to explain it. We are not necessarily looking for sympathy, but we want to lat people know we are not making this up.



Mike

yes it think its hard for some one who isnt sick chronicly to even begain to think what we go thro on a day to day basis

For me it's head to toe pain. My scalp can get too sensative to touch washing and drying my hair is torture. The palms of my hands burn like I am touching the sides of a hot pot. My feet feel like they are being crushed. When my tounge and throat get the pins and needles it's yogurt and room tempature liquids for me.Then I have the normal skin color changes and the pins and needles with the deep throbbing pain and chronic itching.

All the organs in the body have sympethetic nerves that help them function. The organs affected for me are my lungs, heart, pelvic area and bladder. I have had tests that show the structure is fine. My heart beats too fast and it feels like a heart attack with tighness in the chest. My lungs think they don't get enough air and it's feels like I'm suffocating and I get a terrible stabbing pain between my shoulder bladdes. I take medication for my heart and I learned to concentrate on the quality of my breathing. When I wash my face I take several deep cleansing breaths before I hold my breath to rinse my face. I cant swim with my face in the water.
I hope this makes sense PM me if you have any questions.
Take care,
Sherrie

Thanks to All!
So much suffering!

I am the product of well over 100 doctors, and finally have a fine neurologist. (Knobler, who was partners with Schwartman, (back in the 80's). I've had rsd for many years, since 83, but it took 7 to get diagnosed.
Now, I've been with Dr Knobler since the early 90's, and on methadone longer.
There was a time that I could not see him, as I was working in a small town MT Pocono, PA. Small town doctors. I even took my medicine bottles, and Dr Knoblers notes with me. All were FAR too afriad, so they just said, You don't have RSD! You're seeking drugs!
I sure was! I would get so disgusted, that I asked for my money back, and, THEY SENT IT!

Grrr.

I suppose the point is, that before coming here, I've never really talked about organ involvement, or "full body", other than saying "generalized rsd".

Again, you've all been a big help to me! Many Thanks!

And, my prayers for peace and relief to all!


Pete