A Cold Day in Hell
 

Wow heres a day in the life with RSD that hits home so much for me. one to show the significant others opened my eyes as I saw me in her..

http://www.mypainreliefdoc.com/a-typ...ay-in-pain.htm

:winky:

WOW :(

Thanks for posting that -- I added it to my on-line bookmarks so others can find it.

I like to help people do research on these boards -- especially the new parents with sick babies.

I always think that what helps the most are the "My Story' websites.

Nobody really understands until they can hear it in the words of someone who actually lives with it.

I don't have RSD. I was diagnosed with Fibromyalgia 17 years ago. Way back near the beginning when they first started diagnosing fibro and chronic fatigue syndrome -- it was like "oh, yeah, something wrong with her head" -- no one believed that the diseases even existed.

I believe all of these diseases are related. I believe they're caused by a poisened environment. We're the parakeets in the mineshaft.

Thank you for sharing. You're helping other people to learn and you're also helping other people in pain to be understood. Hugs :hug:

Barb

Hi
 

Thank you for this post,so many from different forums can relate.
Barb said it all as well,thanks to Barb as well. It sure said what
I feel somedays,maybe to many. :hug: to all of us, Sue PN

HI Sandel, I hope I'm doing this right. That is one of the best things I have read on pain. It captured most of what I go through on a daily bases. Thank You

moose53, I to have Fibro. For the most part the doctors act as though they don't believe in Fibro. Sometimes I feel like a stupid fool.

Rashelle
 

Post over at Fibromyaliga forum ,you see your not silly or foolish. But
many times Drs. can be. They know what your going through and i'm
Moose and the others will be of big help. Tell how you feel. :) Sue PN

Hit home
 

I cried reading this thinking I could of written it.
With the added grief I have, I just feel a mess to my fa,ily as I go through the motions to look and act normal. But, inside I screaming a heart hurting nightmare.

I feel like everyone else has pain and problems they donlt live like this. they keep their home spiffy and not have clutter and two months of dust. Why can;pt I have strength, why am I so tored, why does just exsisting take so much energy.

But no one see the hidden pain. I don;t want them too.
Thanks for posting this.
dianne

Hi Moose53,
I've been diagnosed with fibro also by 3 neurologists & a rheumatologist (in addition to the RSD, although, I've seen many, many more docs for the RSD. I'm not running around to doctors for the fun of it, just trying to get some help.)
The fibro diagnosis has just come up in the last year or so for me so I don't know where it came from but wonder if the pain in my back that I've had forever is fibro? I don't know where the RSD ends & the fibro starts or vice-versa as far as the pain goes some days. They're both awful. Does your fibro pain ever feel like muscle spasms that just won't quit?
Sorry, that you had to be one of the early people with fibro. I know how some people can say that the pain is in your head. It must have been harder for you then, when less was known about it.
Linmarie

Hi Sandel,
Thanks for the link. It sounds so much like me.
When I got to the bottom, I noticed the name - Tim Sams. I've seen him, he's a pain psychologist. He was writing a book on pain. It should be out by now, I don't remember the name of it.
Linmarie

WOW
that was amazing. I saw myself in that. Some of the stuff I didn't know came with rsd. things like not being able to hold things in my hand. I stopped getting mike out of the fridge, because I always drop it. (its a gallon jug). When I go to the store, I have the same problems of breaking into a sweat before I get out of the store. didn't know it was rsd. I thought it was just my foot.
Mary

that was quite a day in that story ... i relate. it is a lonely way to live, isn't it? what i saw most in that article was the sense of no one understanding .... how sad. i am not as angry as that person, my therapist tells me i shoud be more angry. but i am more sad ... all the things i miss, all the things others take for granted ... like just taking a shower and not being tired .... i don't remember that ... joan

I really can relate to that story.. There are days when I can pretty much fill at least 3/4 of that letter to a tee...
Thanks again for sharing it with us..
Hugs :hug:
Dawn

Dr Tim Samms reports one Hell of a dramatic description of pain by someone who knows it all too well. It isn't him, of course, since the story is told by a woman, but it spoke a truth that reached every single one of us.

I'm not afraid of waking up yet, but I wouldn't mind if a heart attack or fatal stroke caught me while I'm writing this. I'm resigned to the fact that some day I will have to make the choice between dying in a hospital or nursing home, or taking THE shortcut.

I have this "thing" about quitting: I don't give up. You don't give up no matter what the odds, right? Well, that's me anyway. But I don't intend to end up in the same situation some of Gen Custer's men found themselves in one day; wishing they had saved that last bullet for themselves.

People probably say the woman who wrote that essay lost her "will to live", and they're right. She keeps living because she feels she must, and I pretty much feel the same way. I can't quit the game, but I wish the coach would see how tired I am and take me out.

It's unfortunate that her honest words are being misused in a commercial message; one that sure seems to be pushing hard against the line. In this case, "the line" is honesty.

I don't have anything against anyone trying to earn an honest buck, but Dr Tim Samms, who works for (or perhaps owns), the company that sells the products advertised on the same page as that story, tries very hard to mislead people into thinking he's a medical doctor.

If you click on the link titled ABOUT DR SAMS, you'll read words like: Dr. Tim Sams is a diplomat of the American Academy of Pain Management; He is a frequent lecturer to pain physicians and primary care doctors across the United States, and; Originally trained and licensed as a behavioral medicine psychologist, he has been a pain doctor for almost twenty years.

But Dr Sams isn't a physician. How can I possibly know that? The AMA is very powerful; so powerful that people get sent to prison for impersonating a medical doctor. You know those actors in commercials aren't doctors, but the AMA made the rules, and the rules say there has to be a tag saying the actor is not a medical doctor.

I guess the rules say that if you do print commercials (ads) that even imply you have a medical degree, you have to say you don't have one; but you can get away with saying it on another page. Otherwise, why would he try so hard to appear to be an M.D. in his bio, then admit he isn't in another part of the ad? If you click on the link CONTACT US, you'll find the words Dr. Timothy Sams, Ph.D.

Sandra, when you posted this you had no idea that he put that essay out there hoping that people would read it and think that he was the physician running "his" pain clinics. He's running them alright, but the licensed physician is the other doc, a real doc named Vernon Williams, MD. He's doc Tim's front man for the state medical board.

It's a shame that shady people like this get away with these tricks, but short of executing medical impersonators, it looks like the AMA has run out of ways to block every dishonest scheme.

I suspect his pain clinics and his PRISM products are no more honest or useful than ol' doc Tim himself. He uses other people's words to talk the talk, but this guy obviously didn't walk the walk. Earning a PhD is an accomplishment, but it doesn't bring in the patients (or the money) that an implied MD does.

He didn't exactly lie, but he sure stretched the truth until it is nearly unrecognizable...Vic

Positive Options for Reflex Sympathetic Dystrophy (RSD): Self-Help and Treatment (Positive Options) (Paperback)
by Elena Juris (Author) "RSD is gritting my teeth as I feel the excruciating crunch of every water droplet between my burning fingers after struggling through a shower..."

Thanks for your posting
 

Hi Sandy,
I found you hanging out over here in neuro talk...you thought you could get away from me huh??? I have been sitting here searching the Net to find others in the same boat as me. I am in such terrible RSD pain and feel like the only one on this planet. I feel tired, depressed, yucky, etc. [ya'll know what I mean] and was looking for some place to see that I am not the only one going through this ordeal. Thanks Sandy for posting the "A Cold Day in Hell" for us. I just read it and printed it to show to other family members who just can't handle "my problem" as I was told last week from my mom in front of several of my family members. Makes me feel great! I cried when I was reading it because it sounds so much like my life living with RSD.

I am glad I found you again and was somewhat happy to see that we are all in this together. I am glad I found new RSD friends.
Thanks,
Kathy d.:grouphug:

Wow..
 

Hi Kathy!!.. ohh you are so welcome here buddy I have missed you too and I think often of you and your boy, I am so sory you are still in so much pain and still battling your 'family in denial' man they need a wake up call it's been over 2 years.. I hope showing them the day in hell story realy helps Kathy an you are not alone and you have found us again... we should all write out a typical day in our lives too.

:grouphug: :grouphug:
Yr RSD twin Sandra lol

Psst.. Kathy was one of the first people who I talked to on the old braintalk forum but she could not post there, we had similar origional injury (tire ran over foot) same time lines of spread and same internal involvement and she is a great carring suportive friend whom I usto post alot about in BT1.

need these eye openers.. so many eyes to open
 

Hi Sue, Barb and Rashell Welcome.. I saw so much of my days and thoughts in that writing too, fibro.. RSD.. Cancer.. whatever, pain is so misunderstood by those who do not suffer it..
we need to enlighten the masses so that people don't say.. Huh?? or "but you look ok"(the third time), or "can't you just ignore it and get on with life"??

Sory my babble but that last one realy hurt.

:grouphug:

I cried and felt better somehow..
 

Aww.. Dianne I just want to send you the biggest most caring hug to you hon, I realy can't imagine the pain of grief you must feel on top of all the pain.. Big :hug:

I knew that that the writing will cause pain for some but it can be a healing pain. The grief and loss we all feel for the loss of the lives we had is felt in writings such as these, and if we cry they are healing tears, tears of self loss, and tears of empathy as we feel for her, and as we do know that life and if we acknowledge it we can perhaps begin the inner healing too.

:grouphug: :hug: :grouphug:
Sandra

Hi
 

Linmarie thanks for the book information.. I have fibro as well as RSD too and know what you mean about beginnings and ending pain.. I also have generalized spread and organ involvement so it gets complicated trying to explain the diffrent pains.

LostMary, I know what you mean I realy related to all of it. and Joan there are many ways to griev, that is what we are doing we are grieving for what we have lost, anger, sadness, frustration, or just that awfull numness.. we all deal with our situations diffrently and it always shocks me when someone tells me how I am suposto feel, shrink or not.. hugs hon

:grouphug:

I can't quit the game, but I wish the coach would see how tired I am and take me out
I LIKE THIS THOUGHT ..... HA! I AGREE MOST DAYS. JOAN

Vicc hi.. nope hadn't a clue all I read was the article and it touched home so I thought I'd share.

I too have felt or said things about just not waking up'd be easier before a procedure but it was when I was in a deeper depression or more pain.. cause I wanna live damnit and I will fight this.. but at times the pains so bad I wanna die and I empathise.. I have only been dealing with this 2 years now but it seems like a lifetime.
hugs bud :hug:

Roz thanks for the info I always look forward to your posts I hope your days are going well for ya.

:grouphug::)

hi everyone,

reading that really hit home. i've thought all of those things but i always keep them to myself. that is my life. iam going to try and show this to my husband and kids. mabey this time they will read it.

sue k

Sandel
 

I've read this several times just to see the response from others.
Once again Thank for posting it.

Joan M,i to mostly free sad. But dropping things like a far to big
carton of expensesive Soy milk,when i know my hands can't lift
I get angry,but when i do it in the grocery store embarrassed.
Also it seem like everything i need and is made out of glass is
on top self and i'm looking up from my wheelchair,i get frustated.
But the people in Mo. stop and offer help,then i feel grateful.

But the kids standing around talking in any store when my pain meds
are losing there kick,i'm back to angry. I once yelled HELP ME you
nitwit are i'm put you in this chair,all i got was more pain.

But no matter what those tears we shed are healing tears,and i know
I want to live. If nothing else to annoy my beautiful 3 children and love
my new grandson. Oh shoot they all live to far away. Tears again,
but happy ones because there all doing well. :hug: to all Sue PN
and all the other things those Drs. have found.

Wow.

Powerful essay.

Most people have no clue what we have to hide every day. I get so frustrated and angry with what I cannot do anymore that I will go overboard and do more than I should, just to prove to myself that I still have some kind of self-respect. Then, I end up depressed as my super-human efforts go unnoticed, and their results even ignored!!!!!

I've been dealing with this almost two years now. Three years ago, I confess that I would have wondered if most of us were not just whiners or crazy, drug-addicted depressives. I admit, I found myself convicted and guilty as I dealt, and continue to deal, with just those attitudes from others. I had someone ask me recently about a mutual aquaintance who is having severe mental/social problems and has been acting in bizzare ways. This person had many of these issues prior to her CRPS dianosis, and people were trying to say that she is 'faking' the CRPS to not be held responsible for her behavior. I couldn't give them the answer they wanted. I had to say that her standing mental illness is actually making the CRPS treatment harder, and she probably is suffering more than they give her credit for. "Oh", was the only response.

I was also angry at God. I stopped going to church. Over time, I realized that my anger was really displaced. It takes different people different amounts of time to heal, and some never do. I just cannot imagine trying to go through this alone, and with no hope. At least I have that again.


I think most of us can relate to this essay at some point in our journey. Her words stunned me in their accuracy of how I have felt at times(thankfully few), but have been so afraid to let anyone see. The hope in it is that for most of us, it passes, at least for long enough to get our bearings back again.

Personally, I wasn't drawn into clicking on the ads, so I got to miss that part of the whole thing.....

Thanks Sandel!
:)