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keep venting and dont forget to track how long the meds work folks.

may you all have low pain days ahead.
 
I am going to help you keep this one at the top. I started my log book today and it felt great! Often we experience different and/or weird symptoms and always mean to speak with the doctor about it but when you sit face-to-face with them you can't always remember. So keeping a log will really help our brain-fogged minds on the right discussion path. I always (every single time) leave the dr office and remember something I meant to say or ask. Not anymore! 👏🏼🙌🏼😊
 
thanks MEH. its one of my two great helpful posts.
feel free to refer folks to that one and the what is fibromyalgia.

it does feel to to log you feeling. helps reduce stress and pain levels.
 
2 weeks before my last Dr appointment I took a list of all the side effects I was having, my dr. Made a copy and asked if she could keep it
. I was on cymbalta, with weight gain, dry mouth tired all the time, dizzy.
Lyrica that made me moody, dry mouth, confusion, weight gain.
statin, stomach problems.
blood pressure pills, dizzy and tripping, tired.
above all, it made me more depressed and tired.
forgot....amnitriptolane, sleepy again. Although out of all the side effects, Amnitriptolane is worth it. Sleep is so important.
 
wtg moe! it helped. now she can make a treatment plan for you!
you did great. things are going to get better.
 
Dear AllisonKay I just read your post about the app. I looked it up and am considering buying it. Do you still think it's worth it? I read the remarks about it and they were mixed. Does it make it easier to track your fibro pain?
 
I love the idea of making an overview for the Dr. I've journaled a lot in the past but wondered what to do with the information. Now I know. Thank you so much!
 
I have the BEST holistic doctor who has been my doc since before fibro, about 20 years ago. We have built a relationship of trust and partnership in healing over the years. I have enough pain meds in my cabinet to put the New York Giants to sleep for a week. I take none of them. Almost never. I simply cannot handle the side effects. When I have had to have surgery, we agreed, a post surgical pain med, toridal - anti-inflam + pain relief - why not be able to give myself the injections myself, instead of rushing to the ER, and blah blah blah. Ok so he showed me how to inject my thigh with - yup 1 1/2" needle, and I am better than a lot of nurses who used to give them to me. In the past year I have used this medication, about twice. It was after a surgery a year and a half ago - we decided, screw it: lets make this way easier on me. So when 3 AM hits and I am crawling to the cabinet to give myself just enough to kill the pain......... I am SO grateful for my Dr. who trusts me implicitly and gives me this simple gift I rarely use. But its there, and I feel safer for it. I know the side-effects by heart. I am also a medical advocate for myself and so many people I have lost track. However a doctor can make your life easier with minimal - systemic damage ie; pharmaceuticals....... they should provide it. Period. I have more than one doctor for other things. I scrutinize them, interview them and see if they have what it takes to serve me. If not - I don't engage, or they are summarily fired. Sounds cold? Well we have all been there haven't we? We pay them. Not the other way around. I get pretty spun up on this subject. I have zero compassion for the doctor who cannot connect with what its like to endure pain for decades, yet still be able to smile. If they are more worried about their lisences, then the welfare of their patients - I've got a very short plank on a nice pirate ship they can take a loooong walk off of. Hope you get my humor and my point. I have done my research and my homework. :0) and I need naps, lots of 'em.
 
about the log book, I had to go get a blank book which I call my "memory book", I write my whole day in it and have highlighter pens for it! Smartest thing I ever did. First I had to have that internal battle about even needing it, then surrender to the fact, that it can and has made my life easier. Thank God for that book! Now I know whom I talked to and when and what for and whats coming up the next day. As to logging pain and all that, after 2 decades, it is less important - as I use every natural method that exists to manage pain. So the book is my brain fog crutch. Amen to that! On the front it says "Keep Calm and Carry on"...... well I do my best.
 
WalkingBarefoot

thanks for posting.
i am so glad the book works for you. logging also can be used to vent and that helps a lot as you know.

you said:
As to logging pain and all that, after 2 decades, it is less important - as I use every natural method that exists to manage pain.

i do understand less important. but at what point is it less important?

after you have been on those natural pills your body will adjust to them. the body will take what it needs and dump the rest.

if you dont keep track of when it works and when it stops working, how do you know and explain to your doctor that it's working or no longer working?

i was on a drug called trizanadine for 2 years. it was working for me. as i keep track of it my doctor noticed(from my logging data) that what i was experiencing was signs that my body was no longer being affected by that drug. she had to change the drug and the signs went away.

our bodies and brains are an amazing thing. they will take what we need and toss the rest as need for it stops. at that point you are spending money on a drug as my doctor said, your just pissing away. meaning that if your body feels it no longer needs that drug it will just make the drug come out in your pee.

how do you know when your body is no longer needing those natural pills if you dont keep track?


you said about the doctors: i love this statement!

I scrutinize them, interview them and see if they have what it takes to serve me. If not - I don't engage, or they are summarily fired. Sounds cold? Well we have all been there haven't we? We pay them. Not the other way around.

i always say, you are in control of your treatment plan, not the doctor.

i say, ask upfront if the doctor believes in fibro. if not dont go to them.
your statement put that in terms that folks will understand.

thanks for posting that.
 
guinevere1

the app your talking about for your phone.

what happens if you forget your phone in a restaurant or it gets stolen?
what happens if you drop your phone in water and it no longer works?
what happens if the data base for that app in the cloud gets hacked?

your medical data is private. you need to keep it that way.

you don't take you book to a restaurant or have it stolen or have it fall out of your pocket into the water.
it doesn't get hacked.

keep doing the book. its safer that way.
 
I've found that keeping a logbook helps me recognise patterns in my symptoms.
 
I've always been a journaler. I've found something that helps me quickly find something I'm looking for that I've written. To the side of the page - in the margin - I recap what I've written. For instance: If I write about weird symtoms, next to that entry (in the margin) I write "Wierd Symptoms" That way I just look down the margin and read the two or three word keys to help me quickly recognize what I've written about. It's worked well for me and I've followed that same pattern with my Fibro journal. That way, when you're getting ready for a Drs. visit you don't have to read everything you've wriitten. It also helps if you start or stop a medication - you can find dates when that happened quickly. There are many, many other ways it has helped me too.
 
thats some good information folks. start your book right a way.
 
It is a great idea! I use the phone app Manage My Pain Pro. Very helpful and keeps a full report on your pain, intensity, triggers, sleep, conditions, medications, and more. :) There are several apps out there for pain and I'm sure there is one for everyone. A great idea when visiting your doctor etc. I also use an online database at PatientsLikeMe (a secure online community) that keeps up with my moods, medications, conditions, etc with a printable report to take to your doctor for each visit. :)
I think the reason I have resigned to keeping a diary is because ... well, I forget a lot. And going back over the diary entries I have left, I know that I would always forget something if I didn't write it down. If you are applying for disability, a diary is a very useful tool to keep your thoughts organized.

Everyone that doesn't have fibro, knows nothing about it. Even some doctors things its garbage and we are all just making this stuff up. But if more and more of us keep these 'diaries' and take them to our doctors maybe, just maybe, it will help. If not us, then someone in our footsteps. This is such a horrid disease and it robs us of family, friends, ourselves, and anything else in its wake. I'm all for sharing information that may help others. :) Thanks for sharing! :)
 
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