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RSD Questions : activity level
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 Message 1 of 13 in Discussion 
From: MSN Nicknamecosmicmama  (Original Message)Sent: 4/13/2008 7:06 PM
I am not sure if this is typical or not, so please, I want feed back.
 
From time to time, my pain level is so low that anything I have ever done to aggravate the pain has no effect on my health, other than not being to do so much the next day.
 
I never lost range of motion, and I have no atrophy.  I get weak and don't move without pain, or can't stand clothing on my skin.  For 13 years, I have done battle with my pain, and respond to blocks and rx.
 
I have pushed a wheelbarrow, dug a hole, and cried after vacuuming.  Am I just weird.  I know this affects all of us differently, but sometimes for a few weeks when the weather is warm. I almost think that I could work again.  Then, a few days llater, I am incapable of much of anything.
 
Please, are there any of us like this?


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 Message 2 of 13 in Discussion 
From: ladojoSent: 4/13/2008 8:25 PM
cosmicmama, You could be writing my story. Mine started August in 2005 broke my right hand,and that being my dominate side. Now I'm battling the spreading of the fire from my right side, to my left side. Started in my left shoulder almost 2 months ago, in my left hip too. The shoulder pain causes me to get sick inside. Almost like migraine but not headache. the hip pain is like the paraffin you melt to put your hands in, being to hot and sitting my left hip in and it runs down my leg... the hot pain feels like it drips down my leg to my foot. then I get the pain bouncing back and forth to each side of my body.
I was in such good shape late last summer... swimming every day... doing yard work... When I would spend the day
out shopping with a friend, like you say... I didn't much feel like doing anything the next day.
Just when I think I'm feeling good, someone starts using a drill in my cervical spine. Then it starts it's fire and brimstone pain again... I pray... we have to have a miracle...

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 Message 3 of 13 in Discussion 
From: MSN Nicknameannie570111Sent: 4/26/2008 4:22 PM

My dear,,,,,, so very sorry for answering this... I am going thru injections n with those responding well.. And  also this month  ALL of my meds changed.. talk about weird... I am really  really weird one this month... Loopy n weird hardly describes what all that I am going thru... Then too top all of this off,,, I put a tooth breaking off too long n now looking for the oral surgeon... Not thinking that this is really good timing for any of this......  O yeah,,,,,  some days have so much accomplished and then  that nite the crying starts the pain hits n days of moods n mood swings hits incontrollably... then the sensivity starts n no able too stand anything on skin   at all it all burns,,,,, spices n different things hits  mouth,,,, burns for a few days also....  I am sure that we all go thru these  happenings no doubt... I thinking it was also due to the spinal cord injuries that I also deal with....   so maybe rsd is added culprit making it all more highlighted... Huggzz dear!!!!                     Annie


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 Message 4 of 13 in Discussion 
From: MSN NicknamefranknberrieSent: 4/27/2008 7:07 PM
Hi Cosmicmama,
 I feel exactly like that! I have my good days and I take full advantage of them...but! I pay the next day or so. I have RSD in my arms n hands, my fore arms are atrophied quite a bit and by bicepts have shrunk considerably. I was a very strong and athletic man before RSD, I am 55 years old and have had RSD for 8 years now, I feel like I am 90! I do love those good days, just not getting as many as I used to and now I am starting to have all kinds of other medical problems like sleep apnia,degenerative disc disease in my spine. A couple of months ago I slightly hyperextended my right knee,with in a week it was so swolen I couldnt walk. Then one morning I woulke up because it was very painful to breath...blood clots had formed in my right calf righ below the injured knee and the clots went into both lungs....I got lucky, Im still here to post. From what I read here we all suffer with many of the same symptoms. So breath deep and relax when you can, that helps me a lot!
 
Frank

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 Message 5 of 13 in Discussion 
From: MSN Nicknamekieferskitten1Sent: 4/27/2008 9:34 PM
I to sometimes feel pretty good but, then I go and do something or I push myself just alittle bit harder and then I pay severly for the next few days.  I hate it.  I'm always have a great amount of pay.  I wouldn't say that I'm one of the worst people on here but, I can sense that things are getting worse. It's like when the weather changes I go thru hell for days then I have a good day but then I'm right back where I started if not worse.
 
also I've been having alot more bad days then good days and my bad days are worse then they used to be.  the constant pain is so much more noticable.
 
Michelle
 
I think I rambled too much on this one. Sorry.

Reply
 Message 6 of 13 in Discussion 
From: MSN NicknamefranknberrieSent: 4/28/2008 7:54 PM
Hi Michelle;
 
 One thing about our site is that you can "ramble" if thats what you call it all you want! I to feel exactly the same symptoms as you and so many others do he too...thats RSD! I live on the front range Colorado (thats the eastern side of the rocky mountains.) Wee have weather changes here every few hours sometimes! I have seen 70 degree temperature changes in 12 hours here, snow in the morning and hot in the afternoon......WOW! can that ever play with a persons RSD Bug!
 I have been considering moving to a warmer climate but I dont want to make a huge mistake and move to somewhere like Arizona just to find out the move didnt help with the RSD symptoms.
 May many good days come your way!
Frank

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 Message 7 of 13 in Discussion 
From: MSN Nicknamepain243Sent: 4/29/2008 8:21 AM
Hi my name is tom. I have had rsd now for 20 years. I cant get on line please call me at 916-606-8472, mabe you can help me. I live in california please call after 8-am thanks
 
In a message dated 4/28/2008 11:55:07 A.M. Pacific Daylight Time, [email protected] writes:
-----------------------------------------------------------

New Message on RSD Helpline Support Group

-----------------------------------------------------------
From: franknberrie
Message 6 in Discussion

Hi Michelle;    One thing about our site is that you can "ramble" if thats what you call it all you want! I to feel exactly the same symptoms as you and so many others do he too...thats RSD! I live on the front range Colorado (thats the eastern side of the rocky mountains.) Wee have weather changes here every few hours sometimes! I have seen 70 degree temperature changes in 12 hours here, snow in the morning and hot in the afternoon......WOW! can that ever play with a persons RSD Bug!  I have been considering moving to a warmer climate but I dont want to make a huge mistake and move to somewhere like Arizona just to find out the move didnt help with the RSD symptoms.   May many good days come your way! Frank

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 Message 8 of 13 in Discussion 
From: MSN NicknamecosmicmamaSent: 4/29/2008 11:14 PM
Thanks for the feedback on different activity levels that leave me so puzzled.  
I know I shouldn't be concerned when people look at me and wonder if there is really anything wrong with my health.  I don't share stories about pain with others because it just doesn't help and it seems that when I talk about " it " I seem to give it a life of its own.  I don't ignore it,but something about hearing my own voice say how badly I feel is too much.
 
I still need your stories, please.
 
Again, I have no distrophy, never lost range of motion, and on some days the world is mine to take on.  Then, there days with pain that I can work through,  and days when there is no choice but to be still and wait.
 
Something else I wanted to share is that my shrink perscribed Provigil to help with my energy level.  W/C approved, because the lack of energy was so depressing when I could never get anything done and never had the energy to try.  It has been a miracle for me.
 
For the women, here is some info given by a md early in my care.  HRT with the use  of pellet implants changed my life.  The combination is estrogen and testosterone, and there are some wonderful advantages.  Bone density is affected very positively,energy level and strength is greatly improved.  Libido is much improved.  My risk for heart disease is also positively affected.
 
My gyn told me that my hormone level with the testosterone  would give me the physical advantages of a woman of 37, and I am 59.  I have used this treatment for 6 years, and my life improved almost immediately.
 
There are doctors that use the implants, and some that don't.  I had nothing to lose, and I required hrt anyway.
 
The inet has some info on the pellet implants.  If anyone else has had an experience with this kind of hrt, please let me know.


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Reply
 Message 9 of 13 in Discussion 
From: MSN Nicknamekieferskitten1Sent: 6/17/2008 1:40 PM

Frank,

    Thank you for your kind words. Ahhhh the weather is a real bugger and you know what else is driving me crazy right now as strange as this sounds... They are repaving the road right behind our place and the vibrations of the large trucks and the dumping of the stones are really getting me going.  And, it took me two days to figure out what is doing it and that's the only thing I can think.

 

   If you love the place that you live it don't move youmay regret it.  Even thought Arizonia can be very beautiful.  My best Friend's brother moved there twice he loves it there.

 

  I love living in the mountians.  I'm a nature freak, I never realized just how much I liked it.  I love having the deer and the bears in our yard.  I still am trying to get a picture of a real live bear.  I haven't been able to do that yet. 

 

When I'm really hurting, I scrapbook, make handmade cards and make jewelry.  I have run for now too many emails to answer.

 

 

Gentle Hugs,

Michelle



--- On Mon, 4/28/08, franknberrie <[email protected]> wrote:

From: franknberrie <[email protected]>
Subject: Re: activity level
To: "RSD Helpline Support Group" <[email protected]>
Date: Monday, April 28, 2008, 6:54 PM

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activity level

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  Reply to Sender   Recommend Message 6 in Discussion
From: franknberrie

Hi Michelle;
 
 One thing about our site is that you can "ramble" if thats what you call it all you want! I to feel exactly the same symptoms as you and so many others do he too...thats RSD! I live on the front range Colorado (thats the eastern side of the rocky mountains.) Wee have weather changes here every few hours sometimes! I have seen 70 degree temperature changes in 12 hours here, snow in the morning and hot in the afternoon......WOW! can that ever play with a persons RSD Bug!
 I have been considering moving to a warmer climate but I dont want to make a huge mistake and move to somewhere like Arizona just to find out the move didnt help with the RSD symptoms.
 May many good days come your way!
Frank

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 Message 10 of 13 in Discussion 
From: MSN NicknamefranknberrieSent: 6/18/2008 11:29 PM
Cosmic mama.........you just described how I feel to a T! Exactly! But I have some atrophy in my fore arms and bicepts(remember I have RSD in both arms n hands) I have days where I think the RSD is gone, so I go out and do a bunch of stuff I love to do....then I pay for it sometimes for days. And you know what? The next time I have a low pain day I will take full advantage of it again.
 
Frank

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 Message 11 of 13 in Discussion 
From: MSN Nicknamekieferskitten1Sent: 6/19/2008 10:12 PM
Nah not for me.... Pretty much I'm always in pain and it's pretty good cause I know it's still there but there are days when it's not as intense and I thank god for those few and to far between days and of course on those few days I feel just a smidgen better I go and do alittle bit more even if it's doing alittle bit of extra housework but by the end of the day... I'm ready to hang myself. It's nice to sort of feel as normal as I can.
 
I then suffer like you wouldn't believe for days after until it calms down.... I was lucky for awhile I could take my meds and then wait for them to kick in.  At night this is and then I could semi-stomach having my sheet on my left foot/leg but, lately I haven't been able to do that.... and while it was warmer out we had a fan on.... OMG!!!!  I can't take that to save my self... and being in public if people or small kids get to close I kringe they probabally think I'm nuts....
 
That reminded me of a story when I was in the dentist office and this woman, who and no control of her I'll say four year old daughter,  Okay so I'm sitting there and the room is full and very small,  there's no where for me to politely go, well in walks this woman and her four year old.... the kid dumps all these toys all over the floor and they of course hit my left foot.  I hold my breath and figure its a kid and she don't know what's wrong.... well then this little angel comes over and starts palying near me... I now have my foot tucked up under my chair as best as I can... Then the kids starts flinging toys all around... The mother never says anything and neither odes anyone else... well that's the begining of when I loose it!!! 
 
Cause the angel comes over and Sits yes I said sits on my foot... so I asked her to please not do that... the kids stuck her tongue out and me.  Her mother says she's such a brat... so I tell her mother that I have a condition called RSD and her daughter being so close to me is bothering me could she please ask her to move.  Her mother says to me what do you want me to do about it.  By this time this other woman is rolling her eyes at me about the two of them... So the mother does nothing and the kid is still whaling on me periodically...then the kid kicked me and I tell you I wanted to rip her arm off and slap her mother with it.....
 
but, I didn't I said to her mother.... if you don't control your child I'mgoing to douse you in lighter fluid and light you up and let you burn ....  WOW.... everyone freaked and looked at me like I was nuts.. . Then I said to her mother,  That way she would know what it felt like to me everytime her kid hit my leg.
 
 Finally she picked her kid up and went outside.... the woman who was sitting across from me clapped and told me you go girl!!!
 
I will admit it wasn't my finest moment but , my suttle hints went without notice.
So what was I supposed to do?
 
 
Michelle
 
Just thought I'd share this with you.... I have another good story.  but I'll save it for another day.

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 Message 13 of 13 in Discussion 
From: MSN Nicknamekieferskitten1Sent: 6/22/2008 3:35 PM

Phillip,

 

 

I say if you live near the city of philadelphia go see my two guys Dr. Park and Dr. Lee they deal in pain management and they are also hooked up with PMC Pharmacy and between all of them they really do keep their patients best intrest at hand.

 

It's funny that you mentioned the discoloration in your lower arm cause for the longest time I was getting the warm rushes and the pins and needles in my left arm.  ( my RSD started in my left foot and then moved up to my left leg/ thigh/and left buttocksand my lower back)

 

but, recently about a month or so.... I noticed this reddish/purplish discoloration in my left arm... it comes and goes and my left arm is cooler to the touch then my right one.  ( I never even gave it a thought until my last doctor's appoint on the 12th so see if there was a tempeture change.)

 

Talk withyou all soon.  Unless I can't make it to the computer.  somedays it's harder then others.

Michelle

--- On Thu, 6/19/08, Phillip99621 <[email protected]> wrote:

From: Phillip99621 <[email protected]>
Subject: Re: activity level
To: "RSD Helpline Support Group" <[email protected]>
Date: Thursday, June 19, 2008, 9:57 PM

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  Reply to Sender   Recommend Message 12 in Discussion
From: Phillip99621

Hey guys,

Just wanted to say, you hit my pain sensations to a T as well!

Please describe to me your pain in your hand/forearms if you can.

I've go the pain in my back from my neck down to the middle of the back just right of the spine and all the way back up through my right shoulder blade and down my arm. The reason I ask is because I'm having a really hard time with my right arm from about the elbow down. I get bad pain in the tendons on the right side of my forearm just below the elbow. The spot where I have the hardest time and the most pain though, is right on the underside of my forearm, basically where the wrist connects into the hand. The pain starts in the middle of my arm (on the tendons) from about 3 inches below where the wrist and the hand meet, and goes into my hand into the middle of my hand and also affects my thumb severely.

I also have some discoloration around the wrist area in the middle, and to the sides of my tendons and up into the start of my hand too. It just doesn't look right.

I got an xray yesterday, I'm willing to bet it's not broke. I've also gone and gotten occupational therapy for about the last 6 weeks and it's to the point today that I can't take it anymore. I am also liimited to writing about a page in my handwriting before I start to get a throbbing sensation through my wrist. I am majoring in animation/illustration in college and I was just almost healthy enough to start drawing again until this latest flare up.

I do exercises lightly to stretch my tendons in my arm and keep things moving at a minimum so I don't get stiff, as well as the contrast baths I'm doing every morning and sometimes 2 times a day for bringing down the inflammation.

If you don't know what a contrast bath is, then listen up. Take 2 plastic bins and fill them with water. The bin should be big enough to fit water and your your hand, wrist, and part of your foresarm (ideally) submerged when it's filled with water. You fill one with ice cold water, and the other bin with hot water. Then you start off by putting your hand in one bin for 30 secs, take it out immediately put it into the other bin for another 30 seconds. Keep doing this without stopping for a break for up to 7-10 minutes for the best results. The bath helps relief some of the tension and calms things down.

Anyway, my questions are.....Does anyone have any similar experience with pain in the wrist/into the hand like I'm having? or in the right side of the forearm from the tendons? If so what worked best for pain relief? If my xray comes back negative, where do you suggest I goto if my doctor just wants to dismiss it as "tendinitus"?

Thanks in advance....

~Phil

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