RSD Outreach awareness

Hi My Name is Mary and This is My Story....

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Post  byrd45 on Wed Nov 12, 2008 10:08 am

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From: byrd45 Sent: 5/5/2005 1:21 PM
Hi Mary,
It is okay to make your post as long as you need to. I am just glad you are trying hard to work these things out for your own piece of mind. You have been through so much! Phew no wonder your post is long...no joke intended either. How far are you able to drive to see a doctor? If I am not wrong isn't that at least two hours from Phila. or is it more or less?? Sorry stuff like that isn't my stromg pointHow about I check around through some people I know on line and see if I can find a decent one closer okay..If somehow you can get transpotation to one of the ones I named just let me know. Otherwise I will keep asking around for you and see if word of mouth might help you out. As for losing everything that is not your fault you didn't ask to have what you have and you can only do what your body lets it do. I know that I could never do the things I did four years ago before I got hurt. Don't be so hard on yourself the stress is so bad for you. Fighting within yourself will just make you even more frustrated. I have done the same thing and it is a normal part of the grieving process. Anger,Frustration,Depression, and finally when you can Acceptance. You are grieving what you lost physically and your belongings as well. Your life has changed overnight and on top of this the doctors you have seen are uninformed and have not treated you as they should have. They should have treated you humanely and I am so sorry they have treated you so unfairly you don't deserve that. Anyhow, it is hard but over time you are going to come to your own terms about all this when you are ready and able to. There are no timelines and everyone is different, but reaching out to other people who understand is definitely a positive move in the right direction. It will all fall into place for you in your own time.
Love,
Robyn


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From: Mary Sent: 5/5/2005 9:24 PM
Robyn
I think its 2 hours away...not sure...i am closer to York PA
I do know that i will not be taking the 5 sleeping pills that doctor told me to do monday and i will not go back to see her again and i am not doing that EMG test...i will wait and see if i can find a doctor that deals with RSD and will take it from that point.
my heart goes out to people like me cause i have been threw just about everything more than once the 29 workmans comp doctors many were nasty treated you like crap but you have to take it,so i was told if not then can say your not doing what your suppose to and drop the case...i even had one rude nasty SOB sit across from me putting me down saying i was a lazy fat person who just was out to get all she could and he was a doctor(workmans comp) i was in tears my daughter was with me she got so mad and it was the same day i almost killed my child...see we were on 83 heading to baltimore for this appt about 6 years ago i was still driving but not much because it was hard any way my knee locked and the pain was unreal the cars were bumper to bumper i couldnt move my daughter leaned over took the wheel and got the van to the side of the road...that day i gave up driving.
then to sit in that room with that doctor saying that i am lieing and i'm lazy and just want to sit on my ass and get paid really upset me to no end...heck the little 110.00 i was getting from workmans comp was nothing when i was working i was bringing home 100 per nite or more in tips alone...i would of done anything to be normal and back working...when i told my laywer he said not much we could do i did get papers to file a complaint towards him.

its really hard to keep going to doctor after doctor not knowing if they will be nasty or treat you like your a human being or just because they dont know about RSD or how to deal with it dosent mean its not real and people arent hurting

i would do anything not to hurt or be this way i miss not working i loved being a waitress the custmers were great people and many spoiled me even after i got hurt they kept intouch with me...i miss all the things i use to do and cant do any more i am ashame to even see any of my friends and havent in 8 years...i never use to look my age but i do now infact i look older than i am some days the pains are so bad it takes everything i have in me to get out of bed so for years i havent cared what i look like or how i dress to be honest i dont leave the house except for doctors anymore and i run around in my pjs or sweats all day and they have to be big because any tight clothes hurt

i have tryed to go out but i feel people watching me because i dont walk right and my legs give out on me with out no warnings, the pain in my legs are so bad i just want to go home than i feel bad cause my kids have to leave because of me.

any way i just dont think any doctor has the right to treat any one the way i have been treated no matter what side they work for...and if the dont know anything about RSD or anything else then say so dont just put people threw needless extra added pain for nothing then say i done all i can and you have to find another doctor and start all over again.
not all doctors are that way but many are and its not fair to the people who go to the for help.
so for now i start looking again maybe this time i will find a good doctor that can help me...i still dont know much of anything except that every problem i have points to RSD but my bone scan said i dont

mary













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From: therese521 Sent: 5/5/2005 9:43 PM
Mary,

Oh, this all sounds SO familiar!!!!! Don't despair......we've all been
there!!!!

I'm so sorry you have to go through this awful mess. I always say I
would never even wish this awful thing on my worst enemy.

First of all, I need to tell you that I went through the EXACT same
thing with the diabetes. One day (right after my right foot started
hurting for no reason, with after about 50 doctors, 300 or so tests,
many hospital visits, including Mayo Clinic, and diagnoses of everything
from arthritis to very rare forms of cancer to RSD), my sugar went from
40 in the morning to "HI" (over 500) that same night, and over 1000 in
the ER that night. I've looked up RSD and DIABETES. Get this one, about
20-40 people asked if they're related. As many Dr.s wrote back and said
no. HELLO, if that many people are having the same problem don't you
think they might be related!! Don't be scared they will control your
numbers, just be patient. My biggest problem is that it goes back and
forth, For a few years it was fine. Now all of the sudden the numbers
are going over 400 for no reason. They keep trying meds that aren't
working. In the meantime I feel like crap because it really wears me out
when my numbers are like that. So I all but begged them to put me back
on insulin. So they did when necessary.

As far as the RSD. Don't give up. It's a horrible disease. But remember
"God never gives us more than we can handle!". I'm Catholic and it makes
a huge difference to me. We really believe that when we suffer, we are
helping Christ carry His cross. So we actually feel blessed to have the
pain (although some days....!!!!). I have a good friend who's a priest,
who tells me to offer it up for someone I love who's going through a
hard time. This and my wonderful husband, and my support group of
friends are the only things that get me through each day.

I'm SO glad you found this site. It will help A LOT. Everyone is great.
Robyn is wonderful, I don't know what I'd do without her!

Good luck and keep writing!

Love,
Therese




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From: therese521 Sent: 5/6/2005 1:58 AM
Mary,

Don't worry about your notes being so long. You do whatever helps. One
of the worst things I went through when this started (10 years ago) was
that I was diagnosed with RSD then my "pain management" Dr. said no
that wasn't it because I didn't have "the right symptoms". Well,
obviously he knew nothing about RSD, because with it there are no "right
symptoms". We're all different with this and we all have completely
different symptoms. Just because it doesn't show on a bone scan does NOT
mean you don't have it.

I wish you could get to a judge. It sounds like you're going through a
really hard time with Workman's Comp. Thank God I didn't have to go
through that because we never established where I got it from (although
they say you can get it from repetetive motion and I was driving a lot
then and I was a medical transcriptionist and using my right foot, where
it started, on the transcription machine a lot, so I'm convinced that's
where it came from but I'll never know for sure). I did however (or I
should say my great hubby since he does all that stuff for me) go
through it with Social Security. We had a couple of lawyers who
basically did nothing, then someone at social security suggested we do
it ourselves, that was the best thing we did. I got a meeting in front
of a very caring judge. I told him over and over that I did NOT want to
be there and would much rather be back to work full-time and my
"regular" life. He accepted that and allowed me to go on Social Security.

Hang in there. Things will settle down for you. I won't say they'll get
"better", but as Robyn said, eventually you'll learn to "accept" it and
that will make a big difference in your life. In the meantime, be
grateful for what you do have (your kids). It really has helped me a LOT
to talk to a priest about this. Do you have anyone you know who you
could talk to? If not, don't be afraid to ask at your church or hospital
or even through the phone book to find someone to talk to about all the
"whys" of this thing? It may change your attitude more than you can
imagine. It won't take the pain away, but it will help you look at it in
a different light which at least lets you handle it better.

Good luck and keep writing (no matter how long your messages are!).

Love,
Therese




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From: byrd45 Sent: 5/8/2005 9:48 PM
Dear Mary,
My heart goes out to you! I have to say you must be one strong lady. Don't feel so bad about what they said they don't know you! How dare they!!!!They have no right to say those horrible things to you! They are trying to pull every dirty trick out of their hat because they are terrified! They know you are sick with RSD and in their eyes the dollar signs overshadow everything else. They are scum and I have been fighting back and forth with them for four years and it isn't easy. Don't give up whatever you do you hang in there by your teeth if you have to and remember one thing they are famous for treating people like this. They don't care about our feelings. You are welcome to post on the general board about looking for a doctor.Maybe someone might know somebody. I will ask around outside the group for you too. Don't you worry word of mouth can be real powerful sometimes. In the meantime we are all here for you!
Love,
Robyn
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Post  byrd45 on Wed Nov 12, 2008 10:02 am

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From: byrd45 Sent: 5/4/2005 4:09 PM
Hi Mary,
Your story makes me feel so sad! You don't deserve to have to go through all this...Unfortunately RSD is a tough road and I am not surprised that they have given you the rough time they have.From dealing with Workers Comp personally I know just how horrible and underhanded they can be. I seriously believe you and certainly do not think you are crazy. I believe you are one brave,tough lady and so proud you have not given up your fight for a doctor who knows about RSD. You deserve to be evaluated by a doctor who knows what they are looking at! Now I can give you some suggestions,(but that is all they are of course) so from one patient to another I also live in PA. just outside Phila. I go to see Dr. Swartzmann down at Hahnemann hospital which is in center city Phila. He is a wonderful caring doctor who specializes in RSD, but is so overwhelmed with patients his waiting list last time I heard is like 9 months long. Don't get frustrated though I just started seeing another doctor yesterday who a friend of mine told me about. She is wonderful and she trained under Dr. Swartmann. She really seems to know her stuff and is located in N.E. Phila. Her name is Dr. Loudolf and I am seeing her now for my care in between visits to Dr. Swartzmann.I also know of a third doctor who is at Cooper Hospital in New Jersey named Dr. Goldberg. He also specializes in RSD but I have only been to him one time for an Epidural injection because Hahnemann was to booked. He seemed real nice too.Now I know PA. is a big place, and of course I am not aware of what part you are in but maybe one of these doctors could help you. Mary, I am so sorry that all your pain and frustration has brought you to us,but I am glad you are here and Welcome from the bottom of my heart. If you ever need any information or help just let me know!
Love,
Robyn


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From: Mary Sent: 5/4/2005 7:30 PM
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From: Mary Sent: 5/4/2005 7:34 PM

Hi Robyn
Thanks so much for the warm welcome 80}
it's great to know that there are others who are going threw stuff that i am

wow i didn't know my letter was so long and i didnt even get to proof read it....yikes!
thank God someone came to my door or it might of been a book....laugh

I live in PA but at the end towards the Maryland Line
a good doctor is very hard to find...

I have blamed myself for everything...for slipping ...for losing everything we owned
i'm not rich or dirt poor...we were doing good untill i got hurt than everything went down hill......i still cant believe we lost everything afew years ago
it still hurts really bad and now with everything else thats happen to me
i still cant find someone to help me get back to some kind of normal and ease some of the pain.
every doctor i see does the same thing...start testing all over again then in the end blame it on something else and say they cant help me no more
this doctor i seen monday: thank God i didn't tell her that back in 91 i was put away for over a month for deep derpession eating disorder and taking a gun to my head....it was all way before my accident..i lost my mom and i kinda of went off the deep end i wouldnt except it...after the second time i ended up being put away and seeing my kids hurting i got tuff with myself and said no more...with in 3 months i was off all the medications that made me a walking zombi and i got very busy and got myself together from that day on i did very well...then 7 years later i had the accident the first doctor i did tell and they tryed to blame it all on the 91..so i didnt tell anyone than they found other things to blame it on...so i have found out that no matter what you say to them they will find away to use it and blame the condition on that

I have tryed very hard these past 8 years to pull myself out of this and i push myself very hard but its a never ending battle...nothing i do helps
i miss working and all the other suff i did but no matter how hard i try i cant get back to the way it was...each day i feel i get worse and each day i feel i am losing the battle to fight
2004&2005 have been hard on me i keep losing family members every 3 months my dad sister aunt brother inlaw ect...i couldnt be there for my dad to help with his care cause my body wont let me...i get so dang mad at myself cause i feel i should be doing more...if the doctors sayits all in my head that i can do it if i wanted to
then why can't i...my legs will only work for an hour or two if i push really hard...than i am in such pain that i want to punch walls my body feels very weak and i hurt all over {like i been hit by a truck}
i am picking up weight cause i cant get around and do things like i use to
i'd stay in bed 24x7 if it didnt hurt so much...i tire very easy and i get nasty with my family because i hurt and its not their fault
thats why i got to find a doctor that will listen to me work with me and not give up on me because he cant explain whats wrong
alls they say is everything points to the RSD but no one wants to say thats what it is cause a bone scan dosent show it
everything that i have read so far tells you there is no real test only test to rule out other things ...that you have to go on the history things happen over time so if all other test have ruled out everything else than you more or less have your answer they act like you want to be sick...trust me i dont want any of this not RSD not high BP or the diabetic stuff.depression..i just want to be me

i am soooo sorry..not having anyone to talk to about it and now i find others like me its hard to shut up...i will try very hard to make notes shorter...

mary


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Hi My Name is Mary and This is My Story....

Post  byrd45 on Wed Nov 12, 2008 10:01 am

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From: Mary (Original Message) Sent: 5/4/2005 9:31 AM
I am 48 years old and the mother of 4 from PA,

up till 8 years ago i was a very active person always on the go working long hours as a waitress hostess cook alittle of everything also taking care of my 4 children.

I was hurt Dec 18,1997 at the time i weight 155 to 160lbs

i was active in everything i also took care of 50 needy familys out of my home making sure they had food clothes etc...at christmas i would adopted them out so they would have a holiday so i was always on the go from morning to nite in between working.

I was also very active in my childrens things and sports i was the type of person that didnt see doctors i was a very healthy person and hardley ever had even a cold

while at work on Dec 18 1997 one of the other workers droped her bus tub we were very busy and very short handed

as i came around the cornor i didnt see that the mess was still on the floor (butter mayo food etc...)my foot hit it and my legs went different ways and i heard a loud pop it was very painful

they couldnt let me leave work because we were so busy so after the pain easyed up alittle i tryed to keep going...about 9pm one of my custmers asked why my leg was so huge i didnt know it was at the time alls i know it hurt big time...again i ask to go home because i had such a long drive home so they let me leave 1/2 hour early

soon as i got home i took some asprin and layed down...the next morning i couldnt move or put any weight on my legs at all so i called out of work...i felt i just twisted my legs bad and in afew days i be back to normal...it didnt make my boss happy at all

the next day i had to call out again that made her really mad because i did alot of jobs besides waitress i was also hostess cook and prep cook and i never missed work i have been with Dennys 10 years

so monday she called and said she set up a doctor appt for me and i was to go

so i did...i found out my legs were not good i was told that i tore everything under my knee also they could only do one leg at a time so i was able to care for myself and i would need to see another doctor,so he put me out of work till i seen another doctor for test my boss was really upset and she set up many other appts with that office till she found a doctor that said i could work so i returned to work on lite duty it was very hard to work my legs hurt..afew days later i ended up in the urgent care center in alot of pain my legs were swelled and had fluid in my knee

again i was put out of work again my boss was mad told me if i didnt report for work that day i would be fired

i ended up talking to my laywer{that i had for my son at the time}because i was afraid of losing my job and because my boss was giving me a hard time.

i was told to leave and go right to the hospital and get treatment...so i did from that day on things got i guess you can say nasty....anyway it took a year of fighting but in the end i got treatment and my legs got worse over time the judge made them let me have the surgery on my right knee

i still was being told threw this whole thing by all doctors that the could only do one leg at a time so i was able to care for myself.

afew months after my first surgery the pain was still there and i had alot of trouble with my legs and getting around...my legs would give out on me etc...then my doctor started doing different things to me to try and help the pain he said the other leg hurt because it was taking a beating for the right leg..they did all kinds of things to me like therapy shots etc...

i was told that night it happen that my right leg was worse than the left so they started with the right leg...he tryed another shot that had to be done 4x's he took a needle and went threw the outside of my leg to get under the knee to put scinviskis(not sure of the spelling) its to put cusion under myknee cause he took out all my cartledge

any way i felt the needle tearing threw my leg i felt everything as it went thew my mussel etc...i even felt when he pushed the stuff into my leg the pain was unreal i cryed.

i was to have 3 more of them shots but thank god i had a bad reaction to it because i dont think i could of done it again...even now i can still feel it going in my leg...for no reason at all i get a sharp pain and i feel it all over again and i could just be sitting in a chair or laying down after that day my pains got worse at times i hurt so bad i wanted to scream or hit something just to stop the pain...i would tell the doctors over and over how bad i hurt and that other stuff was happing to me but it was like no one would listen to me or they looked at me like i was crazy...my legs would swell it burned i had shooting pains one time its icy cold to touch different colors than the next hotter than hell and sweating...i didnt understand what was happing to me and no one could tell me...in the past 8 years i have seem 29 workmans comp doctors and 2 of my doctors....most all said the same things but the workmans comp doctors were to help them get me back to work so they didnt offer me to much help or info but some were nice and told me the same as my doctors...that most all doctors would only do one leg at a time and that some day i would need a total knee replacement my doctors tryed pills shots you name it...one of my doctors and 2 of theirs kept saying the word RSD but that word ment nothing to me thats the first time i ever heard that word and no one ever explained it to me

as time went on things got worse i lived in pain every day my one doctor gave upon me and over time now my other doctor has giving up

workmans comp did find a doctor to say i was fine that there is no reason i couldnt return to work and yet others say i cant...

workmans comp has played so many games with me its not funny all these years i call and beg to see a doctor or to get pain meds and they wont approve it so no one will see or treat me..i have never been a pill popper or taken any medications but i was at the point i'd try anything if it would help

we have to go back to court to get the judge to make them let me see a doctor...but while in court they tell the judge i havent seen a doctor in a year or so but the forget to say its because they wont approve it because of this accident i have lost everything i own everything i worked my whole life for gone

i even feel that the judge changed his mind about my other leg because of the way i was dressed...see they took my home and everything was packed up fast to move and i forgot i had a court date so i went but i was wearing shorts and a top and i guess the judge was upset because of the way i was dressed but no one would listen to me of why i wore that...its because its the only thing that wasent packed and i knew i had to show up for court so the judge said my left leg was not hurt that night dec 18 1997 even know it was,the only reason they started with the right was because it was much worse.

after months of my first surgery and that shot in my knee i was sent to the ER they did xrays and said i had a tiny bit of authritice setting in the right knee i was told that happens after an injury as the time went by and no one would listen to me the pain went threw my whole leg and hip and after all this time over the years i feel pain threw my whole body i am to the point i hurt so bad i cant stand anyone to touch me my grandkids want to hug me and play but i just want to be left alone

it took many years but the pain is now threw my whole body it started on the right leg went to the left than up to my arms...so many strange things happing and no one can answer me why

this past jan i started looking up RSD{because it was said again} and everything i have been telling all the doctors is there in black and white but yet my doctor tells me i have all the syptoms of RSD but the bone scan dosent show it

reading many of the web sights has showed me that i am not crazy and that the pains are very real and now i am told that i must find another doctor for pain magment...its hard to find doctors i dont know where to even start....the more i read lets me understand alittle better whats happing to me but still i i feel alone and hurt big time i feel i lost eight years of my life ...these past 8 years i dont do much of anything i dont get around like i use to i cant be active like i was the pains keep me from doing everything...its strange to see and feel everything thats happing to me and i cant find anyone to help me or tell me why its happening

now on top of everything else i was told i am a dibetic and have high blood presher etc...so its going from one thing to the next i am not saying my legs getting hurt cause me to be i diabetic and the other stuff its just i lost so much of my life doing everything to now doing nothing than on top of that being a dibetic and other health problems.

i feel if when i first got hurt if they didnt play all those games that i would of had the treatment needed and been back to my old self in no time and i wouldnt of lost everything or feel the way i do now...but because i was left untreated for so long it made everything worse and even now i feel what ever it is that its taken over my whole body and my life

after so many years of living with this kind of pain and no one helping you that you learn to live with it and deal with the pain and the other things happing to you if you dont you might as well curl up and die...so thats what i did i learn to live with the pains each day and fight hard to get threw the next day some days are better than others the pains are always there but alittle easer to deal with and some days i am so scared that i wont make it threw another day because it hurts so bad

But right now i know the pain well and have learn to deal with it because its part of my everyday life so i wonder if i even should find the pain doctor and go threw it all over again only to end up maybe even worse than i am now...i am scared and not sure what to do any more or who to turn to.

any way if you know of any good doctors in PA please let me know or even if you know of something that might help me...my laywer said i may have to do nerve blocks but i am so afraid because i have heard that they may not work and i could end up really bad and never move at all again...i feel like giving up and give in say they are right i am crazy and dont deserve to be alive and waist everyones time...but then i try to hold on thinking of my beautiful grandbabys....sigh

things that have happening to me over time and still happen to this day

Burning...shooting pains..legs icy cold painful turns color...hot like on fire i sweat

leg cramps really bad...cant sleep depressed twitching/jumping in different parts of my body

hard to move,cant sit for along time or stand ..alot of swelling...brown patches on my legs that itch like crazy and wont go away...so many thing that happen i cant explain

if i could understand whats happening to me and why i might be able to deal with it alot better but its not knowing and people looking at you like your crazy or just plain lazy....what ever it is IT HURTS!!! i am glad i started looking the word up and i found your sight it helps alot and if i cant find the help i need maybe i cant find away to help myself threw reading these sights.

on May 2, i did go to the new pain doctor...i waited 2 hours then when she came in she wasent a doctor i guess she was in training she was a nurse prac,not sure of the spelling brain dosent want to work today.

any way she talked for 1/2 but she didnt want to hear what i had to say then she listen to my heart back then she moved my legs that was very painful and it make a loud pop each time...but she kept doing it

my daughter said she took a safty pin and jab it all over parts of my leg..i didnt know it or feel the pin i thought she was just touching me but i felt it when she stuck me below my bottom.

when she was done she said to dress and she be back 20 min went by

then she came in told me she wanted to do this EMG test and she wanted me on these pills (that my doctor gave me)that help me sleep...i got mad cause she said she wants me to take 5 at a time with in the next few weeks

the pill my doctor gave me does help me to sleep so me and i dont wake up as much as i did but it also makes me sleep off and on during the day with all the other medications i take and this new doc wants me to take 5 aday...my God making me sleep 24x7 isent going to make the problem go away its going to make me a zombi...i have lost 8 years of my life as it is and now to sleep the rest away i might as well end it all now

to top it off she said sahe dont think its RSD as the other doctors say it is she believes it caused because i am a dibetic!!!

my problem is 8 years old...i was told september i am a dibetic but in the very early stage so how can that be...so now i got to go threw everything all over again only to be told later that there is nothing more than can do i have to find another doctor...this is how its been all these years...they try to blame it on everything like smoking weight etc...now this new doctor has another thing to blame it on me being a dibetic.

I am really upset i don't want to start all over again test after test going threw hell only to end up they same as i am today

i am sick of being a guinney pig...i am sick of them telling me what i feel i am sick of them treating me like a nut case(heck if i was i could fix that)...i dont think there is a test that i havent done, this EMG test is cause i am a dibetic so they are checking the nerves...i dont want a new doctor i have mine and shes a good one she takes care of my whole body she does all the test needed for the other problems i have.

she sent me to this place because my surgen said he cant do any more and i needed to see a pain doctor thats why she set up this new doctor.

I want a doctor that deals with this RSD and can give me answers to my questions not one who looks for ways to blame it on everything else but what it really is.

I am so confused don't know where to turn any more...alls i know is that i am not starting all over again and i will not sleep the rest of my life away

so i will start searching again to try to find the right doctor and not one in training...one that will listen to me and give me a chance to tell them whats been happening over the years

thanks

mary
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