What's Full Body & Organ Involvement?
 

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! :hug:

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

angel rsd
 

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.:cool::rolleyes:

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.

:winky:

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!
:hug:

Pete

I have a couple of questions after reading everyones posts. First what does rsd do to your eyes? Does it blur you vision, make your eyes hurt, make allergies diagnosed long before I was diagnosed with rsd? When you have tightening in your chest is the pain there all the time or can it come and go? As far as the bladder part, do you get bladder infection more often? I have never had bladder infection until here just recently so I was just wondering. Also the pain in the lower abdomen what might that be? I was told a few years ago that I had cysts on my ovaries and did they ever hurt like the dickens, but I hadn't had any real trouble ever since then,but I am getting major pain in the lower abdomen where the female organs are located and boy when it hits I can't hardly breathe it hurts so bad. Is there a possibility that rsd is causing some problems with my cysts or what else could it be?
Thank you for taking the time to read my questions and hopefully you can help me.

Sincerely,
Tracy

tracy

mine started with bladder already had cyst on overies before RSD the rsd made them worse. and with the bladder i got really bad infection then i was dx with interstitial cystitis then the kidneys.. the heart thing was the first to go then asthma.. was a runner and a gymnast before rsd. never had breathing issues. and have the lower abd pain

i would get it checked.
now rsd in the eyes to me feel like there is sand always and their dry my eyes stick together and my vision is that of an 80yrs olds im 27

endometrisosi??
 

Just wondering have u ever been dx with endo or ando, That's what I had in my late 20's and had to have3 laparospies and them ovary removed and then total hysterecmtomy. Every month I would have a cyst come up and pop or never go away and left scar tissue/ Then a few years later andometriosis was found when they went in for total hysterc.. My Surgeon said had alot of scar tissue on my tail bone to female organs.

have endo.. wont do the surgery!! my friend has had it for years and has had 4 surgeries in 2 years.. and is healthy .. and having issues. so no thank you!

Don't blame U!!
 

Can't say I would do it either!:hug:

Yes I had a pelvic ultrasound and it just showed cysts is what my gyno said. No signs of endo. But thanks for the question. and thank all of you for responding to my questions.

Sincerely,
Tracy

[QUOTE=screwballpookie;519392]I have a couple of questions after reading everyones posts. First what does rsd do to your eyes? Does it blur you vision, make your eyes hurt, make allergies diagnosed long before I was diagnosed with rsd? When you have tightening in your chest is the pain there all the time or can it come and go? As far as the bladder part, do you get bladder infection more often? I have never had bladder infection until here just recently so I was just wondering. Also the pain in the lower abdomen what might that be? I was told a few years ago that I had cysts on my ovaries and did they ever hurt like the dickens, but I hadn't had any real trouble ever since then,but I am getting major pain in the lower abdomen where the female organs are located and boy when it hits I can't hardly breathe it hurts so bad. Is there a possibility that rsd is causing some problems with my cysts or what else could it be?
Thank you for taking the time to read my questions and hopefully you can help me.

On the eye condition. My rsd started in my leg and anyhow a year later I developed a severe eye condition where I was breaking out in sores inside and out,severe dry eye,developed pain behind my eye/migraines,extreme floaters. Was in crying pain from this. I went to 11 eye specialists,40 plus eye apts in 1 year,neuro for mris,allergist,rheumo etc etc. Saw a couple specialist who deal with rsd one many here have heard of Dr Stanton Hicks. The reason is the eye condition did not get better with all the eye meds,orals,etc and the pain did not go with what my dx of dry eye and bleph. Anyhow I was told and even by my current pain doc that the eyes are not effected by rsd and it is in the limbs. Now how this can be when like others stated here that they have full body including organs and I know a gentleman the rsd started in his eyes I do not know. I guess for me what ever you want to call it I hope that what the treatment is for the rsd will help with my eyes. I hope I made sense.
I can also relate to that my gramps who is 86 is healthier then me and more active. I am 30. I used to be sick with a flu prior to my rsd I would say every month with a fever for at least 2 years. I would be better for a few weeks and then again hit with the flu. I don't have that now but I do get so many infections like ears,eye,skin. Again told a fluke. Like how? One thing if older not when young. Ok many thoughts as my rant is over

Hi Tracy,

My vision is blurred when my pain is flared. I know one of my medcations causes this as a side effect. I get tighness in my chest when my heart is beating too fast. Which happens when my pain or anxiety is up. It isn't present all the time. I get pain in my pelvic area that comes and goes (I also broke my pelvic bone in a car accident years ago)
These are good conversation points to share with your doctor. Please, write them down and take them with you to your next appt.
I hope you get answers that will help you.
Take care
Sherrie

OK,
I'm a Boy.
A Man. (WAS) A MANLY Man!
GRRR!

Well, whatever....
It seems that this organ involvement is mostly female, except for heart, and lungs.
I mean, well, I'm shy....
My Organ involvement is not Female...

My "Testosterone" is low. And, I'm far too lazy to get it checked again for the jillianth time. I KNOW it's low! (Don't wake up "Happy", ya know? EVER, HARDLY "THAT'S A JOKE") can I be any more real than that?)
Got no "Drive" , and, I'm used to FOUR WHEEL!

My heart, Well nobody ever checks it, I get on that thing at rite aid, and it always reads high. So?
I try again. High! So? What' that mean?

Hey, I have a TBI!
Isn't this all normal?
the gland under the gland tells my glands "not to be "happy", and my bp to be high.
That's what I figure....
Am I figurin' too much?

Dam.
Sometimes I can be OK,
Sometimes I can be sooo stoopid!

Anybody got any help?
I know, talk to me neuro doctor...

I'm not shy....... yea. right.

Pete
Asb

Full Body & Organ Involvement
 

Hi Pete,
This is a beast isn't it. I just wrote Dew a long message. When I was first diagnosed with RSD, (after having it 4 years) I started doing research and found a RSD Doc in Florida, called Dr. Hooshmand. He is retired now, but still has his website up and really has some good information in it. www.rsdrx.com
There is a part on it called puzzles-it's about 140 questions from patients and his answer. On is on Organ Involvement#34 . There are other questions regarding female organ involvement puzzle #127-maybe something there can be informative.
We just had friends visit for 10 days from Oregon. They come every two years. They both are in the medical field. They both are on hormone replacement therapy, thru a medical Dr. that specializes is this and uses a compounding pharmacy to fill the prescriptions. The prescriptions are specifically made for 'you' after having your hormones tested. The hormones are made from natural products, whatever that is. But, I have just seen a Dr. that has been doing this for 25 years. This has been on the Oprah Show and Dr. Phil Show. Many people have said their lives were improved. So I've giving it a go. I see my Dr. in a couple weeks again.
Anyway, This couple that visited are BOTH on the hormone replacement therapy. They are both 61. He is on testosterone. And likes it fine.
High blood pressure is one of the bad parts of having RSD. Most of us are on HB medicine. RSD is an autonomic disorder, which means the involuntary organs are involved, like the heart. Circulation is a big factor. Both are factors in what you are talking about. I had had never had high blood pressure before RSD -exercised 6 times a week. more like a fanatic, miss that tennis, water skiing and snow skiing especially. These RSD meds also cause weight gain, so it's really important to exercise and try and keep the weight down.
Hope you like Dr. H's website. Lots of good information on it. I've copied some of it for my Dr. He is very open to reading. I'm going to try his new clinic with the HBOT. The HBOT is important part of increasing circulation, getting blood flow to all parts of the body. Have you ever tried it. My Dr. built two clincs within 5 miles of our home and the only HBOT outside of hospitals in Arizona.
Take care, enjoy your posts and caring thoughts for others, especially our 'special' Ali. Your friends, loretta

Thanks Loretta!

I've just seen my Doc,, and he's written a script for some serious blood work, including all the hormones. (I thought that testosterone was one thing, no, at least there's more than one test). So, I'll get that done and, we have a compounding pharmacy nearby.
(I used to use a "compounded" testosterone, a gel, just spoon a certain amount on your arm, and rub it in. That was immediately after my tbi). My subdural hematoma was near my brain stem, pituitary, and there's a gland under that, that controls a lot of these functions. I think.

I'm going to hafto get my BP checked too.

Thanks for your kind and thoughtful response!

Pete
Asb

I guess I can say I am one that is not on high blood pressure meds. The one thing that was brought up to me by my mother-in-law the other day was of concern to me and I hope you guys and gals can help me out with your opinions. I am on many meds, probably not on as much as you guys and gals, but anyway when it comes time for me to need to call the docs for refills on my meds they never see me. I guess i should just say my pain doc. About every 3 months I need to call them for refills and they never want to see even to check and make sure meds are doing okay with me. Is this normal? Is this how everybody does it or am I just crazy? My mother in law told me that before she can get anymore of her meds which is completley different than mine she has to go see the doc before he will give them to her. Which way is the normal way? All I know is my pain doc wrote down in the records is that I see him on a prn basis. So can you tell me how it works for all of you? Is my doc needing to see me every 3-6 months for a check on all meds or is it okay that he just does it the way he is doing it? Please help. Thank you all very much.

Sincerely,
Tracy