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Nireno

Active member
Joined
Jul 9, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
00/2011
Country
CA
State
Province of the moon
This is so frustrating for me and it's probably hindering my ability to get well. Whenever I go to a doctors appointment just getting there and waiting and sitting up (spinal disks are slipping) drains my mind to the point where I can't even remember the points I wanted to discuss. I'm usually in such bad shape talking is an effort and my mind goes blank everytime. I phoned the doctor yesterday she just phoned back but again I'm having a bad day which drains me of all energy and makes me anxious and I can't properly get my point across about what I wanted to change or discuss. My memory is horrible and it vanishes when I'm in body distress, so frustrating. I make notes, which has worked but then have a horrible day and forget them. Or I bring them and am so drained I make it as short as possible because the pain is agonizing. I feel like I'm not reaching them on a level that I need to to get the proper care I need because of the pain and weakness. I've brought in people with me but they really have no clue how I feel or understand what I am going thru so that's not helped either. Plus most days I don't look sick to them, I'm not emaciated, or dishevelled (usually). Plus they scare me a little to be honest I need them to help me figure out what's wrong and add some quality to my life and I'm afraid coming across like I'm just there for the meds or saying something that would offend them. Plus with my long history with this I have been aggressed against by doctors who say there is nothing wrong with me and all I can do is sit there and cry and they take that as a sign I'm depressed. When actually I'm in just so much pain and so overwhelmed with it I can't concentrate on anything else. I'm afraid I'm coming across cold, or stand offish when really I'm exhausted, in pain, and my mind goes blank, or highly anxious because of my history of being repeatedly told I'm depressed. Only now are tests coming back showing results of illness. I'm 37, this began at 27. I'm frustrated with my drained brain counteracting my efforts. I needed to vent...
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I understand all you say truly, and once its on your notes you are anxious or depressed you feel so weakened from the outset......like they are not taking you seriously.

How about on a better day you write a letter to the doctor explaining more or less what you have said in your post in polite terms and listing your pain and other symptoms......post it asking them to read it prior to your next appointment.

They will then have all the facts in front of them to digest fully...the pressure is off you to remember and explain all the details.....and hopefully together you can find a treatment plan.

Good Luck
 

Nireno

Active member
Joined
Jul 9, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
00/2011
Country
CA
State
Province of the moon
That's a good idea. I've been sending emails as things progress when I think of them. My doc saves them we go over them at the appt...but only for the one doctor. It doesn't work over the phone and some days are better than others. I think it has something to do with the meds effecting my memory, maybe not. It's just frustrating. Thanks for responding.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
I email my doctor pretty regularly. It works well because my memory is kind of flakey too. My doctor seems to like it too.

I'm sorry you are in so much pain. I hope you have better days soon.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Do you get replies to your emails DK or Nireno or do you just use this as a method to pass on information.
 

Nireno

Active member
Joined
Jul 9, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
00/2011
Country
CA
State
Province of the moon
I get some replies. I also want her to have a copy of my test results from other doctors so that maybe we can come up with treatment options, testing, and I've been having some very strange symptoms lately so I wanted them recorded and input later on. I did go to the hospital twice but the wait times here are ridiculous I think I waited 6-7 hours when my hands swelled up and turned yellow...by the time they saw them they had reduced. Had deep eye pain, like being stabbed for 3 days was very scared vision was completely blurry and couldn't open it. Gave in and went I thought I was going to lose my vision. The long wait time, extremely bright light and constant noise for 6 hours made the pain 100x's worse. The nurses sat on their asses and chatted for hours, while I lay in a back room totally forgotten. My neighbor's visitor talked about himself none-stop without pause for 2 hours straight. Normally, not a problem that day HUGE problem. My nerve damage moved into my eye and, face and was going into my ears. I RAN out of there when my ears started crackling and popping. I had my fingers in my ears and my hands totally protecting my face, it felt like it was being torn off. I expressed my concern a few hours earlier to the nurse who left me in the backroom. She said 'you look fine to me' my nerve damage only causes slight swelling but my muscles in my face were starting to droop and the sore eye's pupil was huge while the other eye's was much smaller. Of course she failed to notice this...she didn't even ask why my eye was shut. She sat on her ass for 3 hours having a great time talking about herself and laughing away. There was only one other person waiting there was no one in the emergency waiting room...no doctors anywhere and about 7 nurses sitting around a table right near me being so loud I actually went a little insane, for hours. I ran out went home and fell asleep for about 2 weeks...woke up a few minutes each day for food and water. It moved into my brain...skull actually kept creaking, brain was bubbling and fizzing. I woke up from the bone pain and had to press push my temple bones back inward they'd been so swollen I couldn't wear my reading glasses. It creaked...horrible. When I got enough energy to actually get up and heat up some food I was screamed at for being sick and sleeping the whole time and threatened a little bit. It's been about 3 weeks, I'm starting to look like me again. It's healed except for the bubbling in my head and an ear that crackles...I'm not going to bother going to the hospital again doesn't matter what it's for. Moral of the story...don't get sick in Alberta, Canada...no one will help you no one will care, and they'll just give you shit for it. It's like a 3rd world here as far as health care and humane care is concerned. Rant over.....sorry everyone.
 

Hsmommy

Active member
Joined
Apr 30, 2016
Messages
34
Reason
DX FIBRO
Diagnosis
04/2016
Country
CA
State
AB
I'm sorry you had such an awful experience. I also live in Alberta. I've only ever had positive experiences when
utilizing healthcare. Having said that, I haven't had to access a lot, even with three children (one with special
needs). I have a great physician & pain team. My pain team even does follow-up phone calls. I hope you are
able to find compassionate, capable care.
 

DK_engineer

Very helpful member
Joined
Jun 20, 2015
Messages
579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Willow, I always get a reply. If my doctor is out the nurses will review the email with one of the other doctors and answer. The email conversations also become part of my medical record.
 
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