Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-28-2009, 05:27 PM #1
AintSoBad AintSoBad is offline
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Default "Stinky Folks", How do You deal? (very private)

How do you deal, with, when you were once "so happy/proud, almost" of how your "self once emanated itself"? That is, how the "Scent, of oneself, contributed, even and especially, contraband, in the dark, to one's "part'? (Your "Fume, once set off your own scent?)
(It's ALL in the Scent), I used to say....

After my 2nd accident, which brought on the TBI> broke discs, etc. it occurred to me, that I could not control my perspiration. NOT COOL!

Between Female and Male (Note our Mammal Pets) dogs especially, how "Scent" has got SO much to do with it. Nobody's gonna tell me, that it has no place in the human zone. Right?
Now, nobody is sniffin' anyone's tail here, but..
Lot's of you know of what I speak.

Another note,
The Dam Shower Hurts!
Now, I built a home, with Kohler bathrooms, and whirlpools. That's gonna be gone, tomorrow.
But, I've been "outta there" for some years.

I'm still trying to figure out, how to get by "That Smell", that isn't quite, or close to even , being, ME!

I, used to smell good. (Or, so my ladies told me) and, they were "drawn".
Why? (I used to think, and still do, that "It's All in the Scent"!) No more!

And, then,
WHY, is it so different with RSD?

What is going on?
I know it's widespread, because Dr Knobler tells me, his RSD patients call them selves "stinky people".
We avoid showers. ( I know that's not all there is to it! )

That's certainly one cause, but, I remember, when I was able to "work hard",
even after having my first stage of RSD,
it was the 2nd "Hit" to my head, that caused my perspiration to take on an entire other "State!".
I was working my business on Mt Pocono. A place that NEVER required A/C. Blankets in the night, ALWAYS!
I took a shower, then, went and sat in my car, with the A/C on, with a magazine, trying to get my pores to close.
I can't do it!
When i take a shower now, I put my A/C on LOW, so that I can close my pores as soon as possible. (I know, this hair has got to go! too,)

But,
I'd doubt that i'm the only one noticing this.
I use,

Anti persperant spray, around my ears, and on my neck.
Certainly strong stuff in the "pits".

And GoldBond powder (not talc) some superior stuff, on my "other" places,
and a/persp on my feets, with powder.

I just can't think of something else...

My Doc, has offered another "pill", that will/might help with it, but, I reject more pills!

Does anyone know, other than this "pill" that I might, we might, use
to control this perpiration?

And worse,
Sweating is one thing.
It's a Way that we Attract those of the opposite sex. Or not. (I have NO consideration, at the moment, of trying to attract one of the opposite sex)!

But, My perspiration (scent) has changed, I supposed it has something to do with my PH, or something....
Heck, I used to "smell good"...

Anyone have any thoughts on this, of most embarrassing of thoughts?

Is it out Meds, that throw our Ph out? Or something like that?
I just don't know...Volcano! (jimmy Buffett)


Thanks.

You are All my friends!

Pete
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Old 06-28-2009, 07:56 PM #2
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I keep a small package of baby wipes with me... one in the car, one in my backpack, one in my purse, and a bigger package in my bedroom and bathroom.

Never know when "That Smell" is going to pop up... sometimes I sweat on an ice cold day....

Hope this helps, even a little...

Abbie
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Old 06-28-2009, 10:19 PM #3
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Lightbulb

Males who use opiates for long term pain issues, run the risk of
having their testosterone levels go way down. This might be happening to you, and hence your "scent" has changed.
Some doctors will test you and give you supplemental testosterone if this is happening. Testosterone is also important for your bones!

Opiates and other drugs used for pain can also cause increased sweating. This can alter the bacteria on the skin, and change your "scent".
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Old 06-29-2009, 02:31 AM #4
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Default some ideas

i hate showers too, they hurt too much but we have to force ourselves to shower to get the toxins off of us. i bet a lot of toxins are coming out with all the meds we are on.

i wonder if botox would help with the sweating for rsd people. they do use botox a lot for sweating.

when my pores stay open, i put the fan that is 2 feet from my head on medium have it on my head only. once the brain cools the rest of the body follows and the pores close. i repeat this often thru the day.

far infrared sauna might help too. i know some people that used these and their stinkiness went way down. i wish i had one.
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Old 06-29-2009, 07:44 PM #5
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There is a product called "No Rinse", a moisturizing body wash that you just wipe on to clean your skin anywhere on your body. There are probably other brands available for the same purpose. It says on the bottle I have "Used by NASA". If anyone would have a problem keeping fresh, it would be an astronaut.

A medical supply store would probably have such a product in stock. I got mine on the internet.

I hope this helps. Regards, Lil
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Old 06-30-2009, 11:09 AM #6
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Lil, I have the same type of stuff for my legs (probably a different brand as I'm in Europe), because a washcloth hurts. It's a lotion that washes the skin without rinsing and it smells heavenly. They used it for my grandma (who couldn't get out of bed anymore). Luckily I don't sweat like crazy, but the RSD limbs are hard to get washed properly and frequently (pressure on the legs while rubbing the washcloth is awful). I have help with that kind of stuff so the easier it is to do, the better. It hurts far less to put a lotion on than it does to rub a cloth back and forth. Unfortunately, it needs to happen that way too, and regularly (but not that much thanks to the lotion). You can't not wash. I've always been proud of myself and I cannot let that go if it kills me.
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Work related (car) accident September 21, 1995, consequences:
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 07-01-2009, 01:57 PM #7
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ive not ever had armpit stinch until i had my first rsd [bad ]flareup,,,,when the flareup calms down so does the smell,,,,ive worked construction all my life and played competitive sports and sweated like a pig,with no smell,,but my first bad flareup and i didnt stink,i didnt smell..I REAKED!!!!!!!!the smell would knock a buzaed off a crapwagon!!!!!!!!!!!!,,id wash them 10 times a day and 10 min later they smelled bad again,,now that im symptoms are down ,,the smell is gone,,,,,,,,,,,my money is riding on the rsd being the culprit,,,,,,,,,,,p.s you guys are too easy,,,,deoderants dont and wont cut out that smell only thing that works during a flareup is diseal fuel and a torch!!!!!!!!!!!!bobber
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Old 07-01-2009, 02:46 PM #8
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Bobber,
You is funny!


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Old 07-01-2009, 03:05 PM #9
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Hi Pete,

I also have the same 'stinky issue' as you! Before I got RSD, I used to always be really clean and fresh but now, I seem to always smell!

I have mentioned the smell to my mum and she says that she can't smell anything but yet, I ALWAYS feel really sweaty and can smell it on myself sometimes. No one else has ever commented on me smelling either so i'm not sure if it is as bad as I think it is. I know that we can be more sensitive to smells so i'm not sure if that is the issue.

I try and shower every day if I am going somewhere, even though it is extremely painful. If i'm not going somewhere, I will miss a day and then get in the shower. I used to love bathing before RSD but now, I always dread it! When I am getting out of the shower, I sometimes go really hot and then feel as though I am going to collapse which sometimes makes me sweat. I think sometimes i'm cleaner before I got in the shower than before LOL !

It's in the 90's over here at the moment which is really stressful as it makes me sweat more and I therefore have to get cleaned more. I used to love Summer before RSD but don't like it as much now!

I haven't really found anything to help so far. I just make sure that I get a really good wash in the bath / shower and then use lots of deoderant and a bit of perfume. I also try and get another wash throughout the day which can be pretty stressful but does help sometimes.

Sorry that you have to deal with this also but know you aren't alone and that we all understand!
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Old 07-01-2009, 05:29 PM #10
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This is a really odd phenomenon.
Has our nose changed?
(I think those who are married, can ask their spouses) that may be best.

Maybe the meds have changed our ph?

Maybe the disease has changed something?

What?

I think that, if one is "used to our own personal scent", then smelling ourselves doesn't work.
But, after my second accident, my rsd changed, for the worst! I was ABLE to "smell myself".

(Funny this "Smell Yourself" comment reminds me of the first Hannibal Lechter Movie, Directed by Michael Mann, called "ManHunter". It's the prelude to "Silence of the Lambs") before they ripped it off, and called it "Red Dragon".... Good Movie, if you like that sort of thing, one of the best.

Anyway, I think our own scent glands get "used" to ourselves. Then rsd changes this, and we can sometimes repulse ourselves!
Ugh!
Yes, we must shower / bath often, which can be painful. I used to enjoy it. I'm sure ya'll know what I mean. I built my home with a whirlpool and a wonderful shower afterwards. Aqua therapy!

Powders, anti perspirants, pills, whatever, all can be used.

It seems to me, that it's just another thing to add to the ever growing list of "Inconveniences" that we are forced to live with and endure.

You all know I'm going through a divorce, and, that will be it.
I have no further hope or dream of living with any person again, ever.
And, I love people, is what makes it sad.
I don't want to be alone.
Oh well. a story for another time....

love to all!

Pete
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