[msdrea83]

So I have one more speech to give... thank god its the last! Its a persuasive speech, so I'm going with something along the lines that Doctors need to believe in "invisible disorders".., or something along those lines...

I have to do it on the 15th, so I'll be using the answers that are posted through like the 13th.... and everything will be anonymous

I have a few more questions if you all wouldn't be sooooooo kindly to answer so I can make some statistics/charts... all that fun stuff! Thanks guys!!!!
(o ya, last speech, i left out that I had rsd till I was done and answering questions... they were all like and i ended up spending just as much time giving them answers to questions as I did in my speech)



1. How long did it take to get a dx? how many docs?

2. have you ever been denied treatment?

3. Been told its in your head/making it up... etc? by family, friends or doctors?

4. Been called a drug seeker/addict?

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

6. Felt you were alone at least once since getting the dx?

[Mycah]

1. How long did it take to get a dx? how many docs?

8 months, 8 doctors

2. have you ever been denied treatment?

no

3. Been told its in your head/making it up... etc? by family, friends or doctors?

yes, just doctors though

4. Been called a drug seeker/addict?

no

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

not applicable, never been to ER for this

6. Felt you were alone at least once since getting the dx?

yes


Good luck with your final speech.

Nancy

[hope4thebest]

Andrea,
I hope this information helps!

1 How long did it take to get a dx..how many docs
Hard to say how long the RSD was brewing..I'll say 6 months..2 docs

2. Have you ever been denied treatment?
A few tests, such as a foot sonogram, a special test for
neurofeedback, more warm water aqua therapy and physcial therapy,
a special compounded cream that apparently was too expensive

3. Have you been told it's in your head, by docs or friends, etc.
No, everyone at least acknowledges the reality of the pain..

4. Been called a drug seeker, or addict?
On the contrary, I have declined a lot of the suggested meds, so I
'grin and bear it' alot..

5. Not been believed in the E.R.
I was in the E.R. about three weeks ago because of terrible lower back
and hip pain and I told them I was concerned it might be the RSD
spreading..I have lower limb RSD ..they were very understanding and
did a CT scan..this acute episode took about 5 days to resolve...

6. Felt alone at least once since getting DX'd
Oh yes, yes, yes!! I used to hike and and was
physically active..this turned my world upside down..Because the
pain is invisible,(except for the swelling and redness) I feel that
others can't possibly comprehend what it's like..

I hope this helps with your assignment. It's great that you are educating so many by choosing RSD as your focus!

It can help others get an early diagnosis!
Thanks for this!!!
Hope4thebest xoxo

[Skooz]

Originally Posted by msdrea83

So I have one more speech to give... thank god its the last! Its a persuasive speech, so I'm going with something along the lines that Doctors need to believe in "invisible disorders".., or something along those lines...

I have to do it on the 15th, so I'll be using the answers that are posted through like the 13th.... and everything will be anonymous

I have a few more questions if you all wouldn't be sooooooo kindly to answer so I can make some statistics/charts... all that fun stuff! Thanks guys!!!!
(o ya, last speech, i left out that I had rsd till I was done and answering questions... they were all like and i ended up spending just as much time giving them answers to questions as I did in my speech)



1. How long did it take to get a dx? how many docs?

My RSD onset as the result of a crush injury. I saw the hand specialist twice weekly after its onset (four weeks after the injury) and each time he told me that "there was nothing wrong" as my symptoms increased. I called a friend, a PhD in Physical Therapy, and described my symptoms over the phone. She diagnosed RSD and told me to get to the specialist or the ER. I saw the specialist within 2 hours, who again denied anything was wrong. I insisted he refer me to another specialist. He referred me to a pain management specialist, who told him that suspected RSD was considered an emergency and he would work me in immediately. The pain management specialist diagnosed me within 5 minutes.

So - one incompetent hand specialist. Six weeks. No diagnosis.
One PhD Physical Therapist. One minute. By phone.
One Pain Management Specialist. Five Minutes. Next Day.

I was very lucky!

2. have you ever been denied treatment?

I have had treatment that was not covered by insurance (i.e. Ketamine infusion, surgery center out-of-network expense for stellate ganglion blocks, medications like Ambien CR and Thaladimide).

3. Been told its in your head/making it up... etc? by family, friends or doctors?

Been told by in-laws "haven't they fixed that thing yet", "that just doesn't make any sense" until an excellent article on RSD appeared in our local newspaper to educate them on RSD from the patient's perspective.

4. Been called a drug seeker/addict?

No.

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

No ER visits. However, one nightmare in-patient treatment for RSD that left me worse than when I entered and resulted in a letter of apology from the president of the university medical center. Treatment was supposed to be seven-day epidural cath for right leg to cause RSD to go into remission by resetting nervous system. Pain remained at Level 10 in leg when epidural was adjusted to maximum and my pain meds, under doctor's orders to be taken at my discretion, were seized by an over-zealous nurse. After three days, with my pain at Level 10 and with my doctor's concurrence, I checked myself out of the hospital. The head nurse tried to tell me I could not check myself out as I departed for a 5-star hotel to recuperate!

6. Felt you were alone at least once since getting the dx?

Yes - feel I am alone at least part of every day. I believe it is part of having RSD.

Good luck with your speech. I wish we could hear it!

[msdrea83]

thanks guys!

[krank]

Lets see
1. It took about 4 to 5 months to dx. I was very blessed to have an ortho who knew what RSD was. It took him 2 tests. An xray and an mri.

2. Yes I have been denied treatment. It happened right after they removed the leads from a trial scs implant. The pain management quack I received the implant from refused to refill any of my meds because he was very upset that the implant didn't work.

3.Yes I have. I'm not naming any names though. It really sucked.

4.Yes I have, by the same pmq. (pmq) pain management quack.

5.no I haven't.

6.Yes just about every day. Before I got this demon I worked about 50 to 60 hrs a week. I was on call 24 hrs a day. There was a sense of purpose in my life. Now all that is gone.

[msdrea83]

my stupid pm who out in my stim did the same thing! i went back a couple months later and was like i'm worse and this thing isn't helping! and he was like give it time, get a job, get used to it. i was like really?!

Originally Posted by krank

Lets see
1. It took about 4 to 5 months to dx. I was very blessed to have an ortho who knew what RSD was. It took him 2 tests. An xray and an mri.

2. Yes I have been denied treatment. It happened right after they removed the leads from a trial scs implant. The pain management quack I received the implant from refused to refill any of my meds because he was very upset that the implant didn't work.

3.Yes I have. I'm not naming any names though. It really sucked.

4.Yes I have, by the same pmq. (pmq) pain management quack.

5.no I haven't.

6.Yes just about every day. Before I got this demon I worked about 50 to 60 hrs a week. I was on call 24 hrs a day. There was a sense of purpose in my life. Now all that is gone.

[Dubious]

1. How long did it take to get a dx? how many docs?

6wks, 1 doc. Dx confirmed by all subsequent docs including IME

2. have you ever been denied treatment?

no

3. Been told its in your head/making it up... etc? by family, friends or doctors?

no

4. Been called a drug seeker/addict?

no

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?

not been to er

6. Felt you were alone at least once since getting the dx?

no

[debbiehub]

1. How long did it take to get a dx? how many docs?
5 years- about 5 docs
2. have you ever been denied treatment?
No
3. Been told its in your head/making it up... etc? by family, friends or doctors?
No
4. Been called a drug seeker/addict?
No

5. Not been believed at the ER?
-left the ER in more pain then when you arrived?
N/A

6. Felt you were alone at least once since getting the dx?
Yes

Hope this helps

Debbie
__________________

[slm2010]

1. How long did it take to get a dx? how many docs?
many many Doc./Many ,many years,/and still no one has assured me I have fibro
2. have you ever been denied treatment?
I have been denied pain meds/one Dr. said I should find another Dr.
3. Been told its in your head/making it up... etc? by family, friends or doctors?
more than enough times by Drs
4. Been called a drug seeker/addict?
yes just a few weeks ago Dr, said to me. are you or have you ever been a drug addict.
5. Not been believed at the ER?
-left the ER in more pain then when you arrived?
never went to
E R as i knew they would do nothing
I FEEL SO USED AND HELPLESS


6. Felt you were alone at least once since getting the dx?
I gave up faith in medical sdystem. i trusted them.I am so hurt and angry right now I could spit.i have no choice but to go to this Dr. he won't give me pain pills.they make me feel like i'm a liar.