1:25am, and I’m worrying.
In the morning I’ll be meeting Dr B, the consultant rheumatologist who diagnosed me with fibromyalgia in 2006. I haven’t seen him since the diagnosis – choosing to forgo the usual treatments – and to say I’m nervous would be an understatement. Dr B is a very straightforward man; brilliant at his job, but he takes no prisoners and rarely smiles, and the last time I was in his company, he poked and prodded me until I cried. It’s not an appealing prospect.
I’m wondering if I’ll have any sort of clue as to my future after tomorrow, or whether I’ll just be referred to yet another department. I’m glad neurology found nothing wrong, but I’m tired of seeing different doctors and repeating my symptoms for the hundredth time.
Even with medication, I’m stressing. I have a habit of being on my best behaviour in front of doctors; and that means not showing any pain or distress. I play my symptoms down, not wanting to make a fuss. I’m fully aware of it and I know it’s part of the reason why nobody can quite work out what’s going on with me, but seem unable to admit to any sort of weakness; physical or emotional.
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rainey
April 10, 2012 at 1:58 am
I tend to do that, too. I downplay the whole reason for my visit, then get mad when they don’t really help me! i once sat up ramrod straight because I thought I should have better posture; the doctor kept asking me about my back problem, but I wouldn’t admit that i was trying to impress him!
Oh, the things we do…
halfwaybetweenthegutter
April 10, 2012 at 2:02 am
Ha, that sounds all to familiar. I’ve been having physio for tendonitis, and told the therapist it was fine and getting better when in reality it was hurting more than ever. The mind boggles.
Annie
April 10, 2012 at 2:02 am
Have you checked out this website? I have fibro and was so tempted, but there are too many other diagnosis that I’d have to be hyper-vigilant for the rest of my life; but I do know it IS effective:
http://www.fibromyalgiatreatment.com/
halfwaybetweenthegutter
April 10, 2012 at 4:08 am
I haven’t seen the site before, but I’m naturally wary. Everything seems pretty legit, but there’s something about the whole fibromyalgia treatment industry which doesn’t sit right with me. I’m not sure why.
Annie
April 10, 2012 at 4:24 am
I have a girlfriend who has spent 3 years working on-it’s not detox, and it’s not a special diet. There is renal clearance of most toxins that is supposed to occur, but in FMS, the kidneys don’t remove phosphates and the phosphates are absorbed by the soft tissues, muscle fascia, brain (giving that wonderful fibro-fog) and finally into the bone.
In theory, and I’m seeing it play out, you take Mucinex (guafenisen) and eliminate salycilates from your diet and the tender points decrease. But, there aren’t just 18 of them.
I don’t blame you. If I wasn’t a nurse and had some basic understanding of the theory, I’m sure I’d be incredibly skeptical. What’s the saying, for every snake oil salesman, there’s a charlatan.
But my friend is having good luck with the guaifenisen protocol that this Dr. Saint-Aman (spelling?) has postulated.
Israel
April 10, 2012 at 2:10 am
Don’t worry good lady you’ll do fine tomorrow. And hopefully have a little more knowledge as to how to help you feel better.
I wish you the best good lady
halfwaybetweenthegutter
April 10, 2012 at 4:07 am
I’m trying to focus on the hope of knowledge. I just hope it’s not another wasted appointment.
Thanks <3
Israel
April 10, 2012 at 5:01 am
Me to good lady… me too.
Annie
April 10, 2012 at 5:23 am
I’ll pray that it’s not; someone told me one time about the cup being half full; not half empty. CHOOSE that it won’t be wasted and I’ll pray it’ll be a productive visit.
Ron
April 10, 2012 at 1:04 pm
This is my take on the glass half full/half empty nonsense. Makes more sense
http://ronsrants.wordpress.com/2011/11/20/is-your-glass-half-full-or-half-empty/
theartistryofthebipolarbrain
April 10, 2012 at 2:59 am
If you have such a hard time discussing it in person, print out some of your blog posts about the pain (editing as needed) and take that with you. Then you don’t have to complain, you are just handing him data like your medical history of list of medications. Maybe?
halfwaybetweenthegutter
April 10, 2012 at 4:10 am
That’s exactly what my mother is trying to get me to do. I did it a while back with another doctor, and couldn’t help feeling he wasn’t happy about being given a list. I don’t know; maybe I was imagining it, I do get very anxious and paranoid in medical situations.
theartistryofthebipolarbrain
April 10, 2012 at 4:15 am
Whether he is happy or not about it, he needs to read it. Plus, he may have just been surprised. If you think it might be an issue, when you give it to him, just let him know that you are very uncomfortable in medical situations and wanted to make sure you let him know everything that is going on. I don’t know where you are from, but here in the States (granted we have pretty crappy healthcare), we are told repeatedly to bring a list of questions for the doctor when we go to see them. Why should handing the a list of questions or symptoms be any different. I wouldn’t want to give him a huge page of writing, but cutting just the symptoms would be good. Plus, it gives a way to time-stamp the symptoms which aren’t constant. It is something to try?
judithatwood
April 10, 2012 at 3:15 am
If they slide, you’ll look terrific whizzing by! I used to drive my mom crazy in the ER, because I would talk so calmly to the doctors, no matter how bad I was feeling. When I finally learned to let loose and talk, I was able to get the right doctors to help me. You’ll get there. Good luck, and lots of love.
halfwaybetweenthegutter
April 10, 2012 at 4:09 am
How did you learn to speak out? I’m finding it so difficult.
niteb4highschool
April 10, 2012 at 6:25 am
I have been writing notes to my doctors for years because that is the only way I could communicate with them. Now that some trust has been established, I am able to verbalize myself better. It’s awkward, having them read exactly what I am feeling, always second guessing myself as to whether I should have included this or that, but at least they know, and I don’t beat myself up after the appointment because I wasn’t able to speak the truth.
faithhopechocolate
April 10, 2012 at 8:07 am
Can you print a copy of this entry and take it with you? I hope you’ve managed to get some sleep since you posted. *hugs*
zen and the art of borderline maintenance
April 10, 2012 at 9:36 am
That’s a GREAT IDEA! Impressed, would not have thought of that, but that would be a brilliant thing to do. I think I will try that, too!
zen and the art of borderline maintenance
April 10, 2012 at 9:34 am
Tired of repeating symptoms… Those words resonate well with me. I wish you luck. I hope you can find a way not to downplay your symptoms. But I will be honest, I do the same. I am always afraid doctors will think I’m attention-seeking. But of course, we both know that we aren’t doing that, but at least for me, that’s what I’m afraid they will think.
edwardonbebop
April 10, 2012 at 12:49 pm
Maybe you should not hide your pain and distress ? It may send the wrong signal to physicians… I do not really know as I am no expert in anything.
For the symptoms description, maybe you should just write them down on a paper and hand it to each new doctor you are seeing ? Although it does not work if the symptoms change all the time…
Seeing docs can be so annoying and tiring…
Good luck. I hope something will be found very soon.
Annie
April 10, 2012 at 2:54 pm
Good thought; hiding your pain might give the wrong impression that ‘all’s well in Denmark.’ If the doc (especially) doesn’t know the extent of your pain, he/she will be hamstrung and at a disadvantage, so their perspective will be incorrect.
edwardonbebop
April 10, 2012 at 8:14 pm
Did I just say something clever ?
Sorry, I could not help…
Ron
April 10, 2012 at 1:03 pm
One thing to bear in mind – nice guys, for the most part, don’t make good doctors. In a job where you often have to hurt people just to find out what’s wrong, and maybe hurt them even more to fix them, a degree of hardness is not only unavoidable, it’s probably desirable. Judge your docs not by how nice they are, but on how effective they are.
As for talking to them, you might find them less intimidating if you close your eyes. Not only can’t you see the doc, it could help you visualise what you want to say.
A bit late, I know, but I hope it went well.
toadstool123
April 10, 2012 at 2:02 pm
Hi. mrscmonkey here. Just to say if you haven’t already noticed my blog is now http://www.mrscmonkey.com
If you still wish to follow my musings, come follow!
Ooh ooh aah aah, where’s my banana?
ryoko861
April 10, 2012 at 3:23 pm
WTF ^ ?
ryoko861
April 10, 2012 at 3:26 pm
Your apprehensions are totally understandable! It gets old after awhile explaining A) why you’re there and B) getting shoved from one department to another. This doctor may not have the best bedside manner, but if he’s good, then don’t hold back. Tell him everything. After all you need some physical relief. Be brave, strong and go head on! You’ve gotten this far, you can go further!
fallingoutofthefog
April 10, 2012 at 3:59 pm
Oh, I can relate to this. I have a first appointment with a Rheumatologist on Thursday, and I’ve been going over it all in my head… how do I explain why I’m there without sounding like I’m either making things up, or drug-seeking? Or both? When I have my “social face” on, I’m always smiling, so I can just picture myself talking about the aches and pains and unexplained fevers, all the while smiling like an idiot. I’ve been working on typing up a “symptom list”, soon to be followed by a “med list” that I’ll bring with me, but I’m so used to saying “I’m fine”, how do I explain that I’m not?
Anyway, I just wanted to say you’re not alone. I get it. Good luck to you.
My Ox is a Moron
April 10, 2012 at 6:05 pm
I can relate. I am always downplaying my symptoms to the point that most people do not know I have any problems. I do the same thing at the doctor’s so my mother usually comes with me. She will tell it like it is when I try to sugar coat it and pretend it is not that bad.
radioheroine
April 10, 2012 at 7:16 pm
Hope the appointment will be useful!
I can relate a lot to everything you wrote in this post. I always played down my pain etc. as well and got tired of explaining everything to god knows how many doctors. I hope you find something/someone that really helps you.
Ceinwenn
April 10, 2012 at 9:33 pm
Good luck at the Dr! I hope you came away from it with what you need & are able to be honest with your Dr about what you are feeling/going through.
Barefoot Baroness
April 10, 2012 at 10:31 pm
This is one of the major conundrums and problems with doctors and pain patients. I do the same, tend to minimize for fear I’ll be seen as a malingerer, or some other faucet in my own mind. But these are for real worries because I too have rarely let my doctors see the full brunt of it unless I am over the top because of lack of better management. I’ve gone so upset that ant self-restraint was impossible.
Then instead of seeing pain out of control they see it as emotions out of control over something else. It must be something else because if they acknowledged that we were still in such pain it was causing melt downs in their office they are obviously missing something.
Good luck at the doctors, try to be as honest with minimizing at all. I know, easier said than done. You’ll be in my prayers and thoughts. Do let us know please,
zongrik
April 11, 2012 at 12:59 am
vitamin B is very helpful when you are stressed, it’s necessary too!!
The Quiet Borderline
April 11, 2012 at 8:21 am
Please try your best to be honest with your doctors so that you can get the treatment you are needing and much deserving of.
Feel good,
The Quiet Borderline
http://quietbpd.wordpress.com/