I'm Cured!?
 

I give up! I am literally about to lose my mind and at my wits end. I cannot believe what I encountered on Wednesday. I mean I’ve heard of it happening, but O…M…G..! Really?! :eek:

I have rambled on and given a LOT of backstory. :rolleyes: If you like, skip to “And get this…” in bold below.

So I was Dx w/ RSD (as it was called back then) in 2004 after an L5-S1 discectomy. After several months of not healing properly the surgeon sends me to a pain doctor. The PM re-classifies me as CRPS II and I see him until 2009 when I lost my insurance. I have been self-employed since 2003 and couldn’t afford the premiums of $1k a month any longer. I went off all meds except 800mg Ibuprofen and took that several times a day. I did this until late 2011.

The 2011/2012 winter was brutal for me. I start tremorring like CRAZY, severe spasms, pain levels through the roof! The spread had begun and it was well into both legs/feet and now letting me know it was headed elsewhere too.

Since I was in bankruptcy and completely losing my butt due to the economic conditions (the fallout of 2008-2009)I apply for and receive something called CICP, Colorado Indigent Care Program in 2011. This allowed me to at least see a doctor and I had access to an emergency room. I mention the ER because the doctor that I was to see in the clinic would not proscribe even Gabapentin. No meds of any kind for CRPS and told me I needed health insurance. Well duh! I had to be referred to a Neurologist within the system. He did that. The ER docs at least provided me some meds to limp along with as my referral to the neurologist took a YEAR and some begging. They only accept so many new patients with CICP per year.

In late 2012 finally get into the neurologist and oh boy, he’s a young student and I am WAY beyond his pay grade. He did try and help me a bit, but said I needed PM. GREAT! Yes! Let’s do that. Only to find out it would be another year or longer before they would accept any new CICP patients, if at all. So this Neuro doc gives me gabapentin, Soma, tries amitriptyline, reluctantly (because he is not PM) gives me tramadol. The ER docs had given me enough bigger gun pain meds to try and keep me out of the ER for breakthrough, I can’t take it anymore, pain. I rationed drugs this whole time. I have learned to live with a certain degree of pain.

Since 2011 my husband has been jumping jobs and pay grades trying to eventually get me/us properly insured again. We worked our business together since 2005. It was tough to go back to corporate America and command decent money and benefits. Hell, just to land any job was impressive since the economic crash.

So here we are in late 2013 (Oct.) and my husband and I are starting to successfully dig our way out of a huge financial hole, and he lands an excellent job, with Cadillac benefits for us. Wow! This is fantastic! I can finally see ANY doctor (or just about) that I want to. I don’t have to settle for the ONLY neuro doctor that will see me, and bonus I will get PM, etc.

In October start lining up doctor appointments with the doctors I had not been able to see since 2009. I found what I think is a good neuro doc but I cannot get in until late Jan. 2014. On Wednesday I went to see my old PM. The same doc who had classified me as CRPS II.

And get this…

I go to my appointment. They drug test me, cool. In advance I had my recent records from the student nuero doc sent to the PM’s office (some 40 pages). I bring with me my old records (4-5 inches thick) from 2004 to 2009 with me. This includes this PM’s records, HIS OWN RECORDS since they were unable to find or get my old records from storage. As well as an MRI of my back from April 2012.

I try and give the medical assistant info about me (10 years worth) in what seemed like a nanosecond. They’re on a schedule of what seems like 15 minutes a patient. Yikes!

The doctor walks in and he doesn’t remember me. He can’t seem to get my records from the neuro doc open on his laptop. He briefly thumbs through my old records that I had brought with me, that include his records that they couldn’t retrieve from storage. HIS old records. He reviews my pee drug test I had just taken and says "you don’t have any opiates or painkillers in your system". Me: right. Doc: When was the last time you had any? Me: A couple of days ago I took a few tramadol. Then I was in the ER with what I thought was gallbladder last week and had been given Roxicodone, which by the way doc they gave me a massive headache. You see I don’t take them every single day. If the pain justifies it, I take them, otherwise I don’t. But I go on to explain how I am taking them more often do to increased pain levels in many areas. Doc: what do you want me to do for you”? Me: I am wondering about compound creams, lidocaine infusions, um… what about ketamine infusions?

Doc does a VERY brief exam. Mashes on my torso. Touches lightly (OMG) on my most affected body part, my foot. Me: Please don’t do that. Doc: walk on your toes. Me: I can’t. Doc: Walk on your heals. Me: I can’t.

We sit down. Doc: Where did you get the painkillers you say you have. Me: Tramadol from the neuro doc and opiates from the ER. I have been on CICP and have had trouble receiving proper care. Doc: What’s CICP? (I explain and while I do I am SHOCKED that this doctor, who has practiced in Colorado for at least a decade, doesn’t know what that is! Wow!) Doc: What do you want me to do for you? (OMG again?) Me: I want you to help me. Doc: I can’t prescribe you anything until I talk with the neuro doc. Me: ok. Doc: Are you on disability? Me: No, I am planning to file, but I may not get it given how my taxes were filed while self-employed. Doc: Do you work? Me: No. (I don’t waste time telling him I am winding down my business. He is now obviously in a hurry, more patients to see and I am taking way too much of his time.)

Doc: I don’t think you have CRPS. Me: What?! Doc: you don’t present like a CRPS patient. Your skin would be molting. Your pain levels would be higher. You have pain all over and not just in a localized area. Me: But you treated me for several years. Doc: you many have had it many years ago but not now. I think you should get a job and keep yourself busy and keep your mind off this. Me: I have a job! I have a husband, five children, a house, three dogs. I can’t do dishes or make dinner and not be exhausted or in massive pain afterwards. I can’t fold a load of laundry and my arms not hurt and be very weak. He is shaking his head like he doesn’t think CRPS. Me: But right here it is stated in your own medical records. Doc: maybe you had it then, but not now. Me: Let’s you and me go for a walk. It won’t take long for me to lose that ability. I’m having a good day today. The sun is shining, I’m not on a period, it’s early morning (my best time of day)… Doc: I don’t think you have CRPS, it must be something else. Me: I disagree with you. Doc: that’s your right.

I continue to plead my case to get help and begin to cry. He says; I think you should do more PT, and we can do some nerve blocks, or a bier block, but I have to talk with the neuro doc first. Make an appointment for next week and we’ll talk more.

Now I’m just confused and crying and he is on to the next patient. Doc: It was good to see you again.

He’s gone and I am left crying. I walk out, and in my mind there was no need to make another appoint. I say to myself; let me get this right. I should pay you more money next week so you can be more prepared or whatever. We can do blocks. You don’t think I have CRPS (You confirmed my diagnosis in early 2005 and treated me for it until late 2009). My skin is not molting. I am not taking enough drugs. I’m not in enough pain at the moment. I don’t have CRPS. Got it!

I drove away crying and literally screamed out loud in frustration (a couple of times). I have NEVER just screamed like that. I was losing it (completely) in that moment. This meltdown last a couple of hours.

<sigh> Since then I am left feeling deflated, defeated. The wind has definitely left my sails. I just knew that I would at least get gabapentin, and that I would not be forced to go see the student doc again for a refill, since my new neuro doc appt isn’t until late Jan.

So before I start to cry again, I will finally end this. Thanks to anyone who was willing to read all this crap. :rolleyes: More than anything, I just needed to get it out. I am really at my wits end.

Hello Vrae
 

Hold on Vrae, I sure know what it is like to loose your mind. A doctor who fails to listen and address your issues is enough to put one over the top. There is nothing in my mind worse than a physician (that you had before) that is watching the clock and not really doing anything to help you. Vrae, you need a new doctor, one that has all your records, every last one.
I went to a physiatrist. This doctor treats the whole person. I found peace in this direction, to where I can go to the doctor, and feel that my issues are really being addressed. We all deserve that. CRPS is serious for those that suffer it. Your doctor, did nothing at all to help your spirit or your body. I hope you find another that will take the time and figure out something to help you, like the Ketamine infussions. You need some new eyes, and a new brain to help you. Don't give up, there is help with the right physicians. I will listen anytime you need to talk. Sharing here, helps the hurts we have. My new doc. actually took in hand this huge file, kept it for months as she read through it. AT the end of that time, she did understand what happened to me. All was talked about, and by gosh in my own situation I am better. I will keep you in my thoughts and prayers. ginnie:grouphug:

Sorry hun!
 

I am sorry you are going through all this. I would be very angry as well! Hang in there, we are here for you!

Holy crap Vrae! I am so sorry for what you have been through and are going through. First thing I have to say is that doctor sounds like a complete idiot. Does he not realize that RSD/CRPS does not present the same in everyone....does he even know what it is?? You definitely need to find a new PM doctor. I know it's a pain (pardon the pun) to find a new one, I am in the process myself...again! Just get a job and take your mind off of this...yeah, right! If only it was that easy!

I hate that, when you finally get in with someone you have waited to see and you end up leaving their office crying and feeling so deflated. Believe me I have been there! Several years ago I changed to my husband's insurance (when I was still working) just so I could go to the University of Virginia's pain clinic. UVA is where I was diagnosed in 1991 and treated so well, of course I wanted to go back there. The idiot dr I saw this second time around was talking to me like I was a child (real close and tilting her head and talking real soft). Told me she didn't think I had CRPS, that she thought I was depressed and needed to see this doctor on the floor above the pain clinic...they could help me and use biofeedback...WHAT??? REALLY??? You guys are the ones that diagnosed me so many years ago! I had on jeans and a long sleeve shirt, she never examined me, never even turned my hands over to look at them...so, how could she say I didn't have it? My husband and I left soooo mad!! The good thing for me is that I have a great PCP, she backs me up with getting in with anyone I request.

Anyway, I sure hope you can get in with someone else soon so you can get some relief.

Take care and good luck!
Nanc
:hug:

Wow!! Why an uncompassionate jerk!!! Hello, crps spreads in 75% of cases! I also found a holistic approach doctor. Especially having more diseases to fight. Anyway, *hugs* to you. It has been my experience, my neuros have been just awful. I've switched twice, and been dropped once for being "too complicated" and one skipped town lol. I hope you find a good one. This little known neurological illness should be better known!!

I hope things get better!!

TK

Oh Vrae I did read every word, and YES I CAN RELATE! I had something very similar happen when I had to be seen by the Social Security Dr. I did the same thing that day....
I screamed and cried wondered what the *&%# just happened.
(I was denied btw and am appealing through an atty.)
I guess it goes without saying DO NOT SEE THAT DR. EVER AGAIN! Post a nasty review somewhere it may get attention!
I wished I could have been there for you I would have have held your hand (with my good one) and screamed with you!

Vrae my darling girl, if only I could get hold of this IDIOT's work address so that I could paint all over his walls......something along the lines of:

SO NOT SEE DR.XXXXX UNLESS YOU WANT TO FEEL AS WORTHLESS AND HOPELESS AS HE MADE MY FRIEND FEEL.

HE HAS BEEN CERTIFIED AS A HEARTLESS, IGNORANT INDIVIDUAL WITH NO RIGHT TO CLAIM TO BE PART OF ANY CARING PROFESSION.

HE KNOWS ALMOST NOTHING ABOUT HER CONDITION, BUT PRETENDS TO KNOW SO THAT HE CAN DENY TREATMENT.

HE THINKS HER CHRONIC ILLNESS IS IN HER HEAD. HE HAS NOTHING IN HIS.

Ooooohhhhhh grrrrrrrrrrrrrrrrrrrr GRRRRRRRRRRRRRRRRR I could go on and on and on and it would probably get very rude and inappropriate. :mad::confused::mad::confused::mad::confused::mad:
.....

Vrae. Babe. You are amazing, you fake nothing, you give so much and try so hard to overcome everything this disease has thrown at you.

It is very very important that you do several things:

1) Never ever ever have any contact with this man again unless it is because he has begged to be allowed to apologise ON HIS KNEES.

2) Do not believe a word he said to you in this visit. He's either lost his mind or he's a vindictive ignorant selfish (ooh I so want to type the word I'm saying out loud) TURNIP of a man who has decided he doesn't want to treat you any more and has turned his back on you.

3) if you didn't record the visit (I always do this now on my phone :rolleyes:) then make a record today, while you still remember everything clearly.

4) I know it's asking a lot, but make a complaint to his practice. If nobody complains, nothing gets done. It's sad but true. If he's turned on you like this then he will have done it to others. Also, unless you contest it, his 'medical opinion' (fume fume) will become part of your record, and every other medic will read it. It's absolutely unforgivable. He clearly has very little knowledge of CRPS - and as a famous person once said 'a little knowledge is a dangerous thing'. He is the reason that saying is true.

5) I know you know this deep down, but equally I know that you need to hear from us too - HE IS WRONG ON SO MANY COUNTS. A TRUE CRPS EXPERT WOULD PROBABLY PUNCH HIM. NONE OF IT IS TRUE.

Vrae, my little jam doughnut of gorgeousness :winky: you have to put this day behind you. It sounds impossible, but it will happen. You are too strong to let this muppet shatter your confidence in yourself and your knowledge of your own body. You know the truth, and so does your family. Hold onto that and find the strength to start the search for another doctor to treat you.

I feel quite emotional tbh Vrae. When I saw your thread title, my heart just sank to my boots. I didn't read every line of your post because I was just so angry. You didn't need this at such a time. Obviously this would be bad for any of us on any day - but NOW. NOW?! You have been working so hard and getting through so much every day.

Right. I'm going to stop now. You know how I feel. Just believe us and don't for a second even consider a single word from your visit. That's really important. See this new neuro doc and see what he has to say. Go from there.

All I can do is send you a huge hug, along with a big iMug of steaming hot chocolate with little marshmallows and whipped cream.

Bram :hug:

Hi Vrae,
I'm sorry you're going through this, and hope you can find someone better soon that can help you to feel better.
Take Care from your friend, Renee.

Oh Honey
 

Thank you for the support... as always!
 

You all are so wonderful, as always! Thank you!

:mad: This ordeal really knocked me back. It is going to take me a minute to get over or through what he said to me. And yep, couldn't work more than an hour today, and I'm on Tramadol and then Percocet today Dr. A Hole; for my invisible, nonexistent condition. Thanks to the stress you have caused me, the barometric pressure dropping and perhaps the full moon coming.

There is a special place in hell for this man. Period! :mad: