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Symptom List

Mar 03, 2015 8:17 PM

I'm trying to create an inclusive list of every single one of my symptoms to give my doctor tomorrow. The problem is that I can't remember them! And I don't know how many types of pain to try to write down. I know I'm going to forget something pretty major. Just know it. But I feel like I need to really really try to write this list for him because I always fail to think of symptoms when i'm in the exam room (duh, i can't even think of them when I'm sitting at my computer desk.)
I've written lots in the notes in my pain entries. but i'm finding it extremely cumbersome to click on each and every entry to read the comments.

Mar 03, 2015 8:28 PM

Aliya, take a deep slow breath in and let yourself calm down as you release the stress while you exhale. Start with what you remember and write what you can. Leave space to add to entries in case you think of something later. Work from one to the next and the next. If you get a mind block or tired take a break, walk away and relax for a few minutes. Do the best you can but don't worry if its not a perfect list. Many of my docs have online portals for patients to communicate. Yours might too. Remember the tortoise and the hare...slow & steady!🙏

Mar 03, 2015 8:29 PM

I have a document on my computer that lists my symptoms, then as I remember more or new ones show up I add to the list. Then the day before my doctor appointment I go over it, add something if I remembered and fixed spelling then print it put it in my binder that I take and hand it over and tell them to read it and ask me questions. Is much easier to have a 'living' document that I can update and print multiple copies of. I also use the notepad app on my phone ifi think of something while I'm out.

Mar 03, 2015 8:33 PM

What else do you have in your binder gotobef?

Mar 03, 2015 8:59 PM

I print off my pain logs and take them. I only print off the ones from my last print to now but I keep them all in it. I have my test results from the last two doctors as well as my test results from specialists. My sleep graphs and charts from my sleep bot app. My list of meds and when I take them, I'm not on any daily meds though so probably equal to break through meds for most. I have my history from my perspective. known trigger list (like sitting too long or certain foods, things that make anything worse). Things that help / what I am doing to help my self. Lifestyle, like non smoker, don't drink, work full time rotating shift work with standby and overtime. General list of medications and supplements with dosage and times, as needed, with breakfast and such (as needed goes in the color coded spreadsheet). Family history things like mom has lupus and moms mom has Parkinson. My binder is getting heavy. There are different sections so I can get to sleep fast, breakthrough meds, pain log, general info (history, symptoms and such)

Mar 03, 2015 9:01 PM

Aliya I agree with Flappsy take deep breathes in thru the nose and blow slowly out your mouth. Like gotobef said use the app on your phone and when you remember things post them in your memo or note app. I use my memo app for everything now days. My memory is so bad now days. You will do fine tomorrow.

Mar 03, 2015 9:11 PM

gotobef, sounds like a fantastic binder. i really need to put this together for myself! I printed a bunch (last 40ish) of my pain logs before my appointments last week but couldn't get anyone to look at them at all. But the lab results, etc would be so handy to have in there. I regularly have doctors ask if any blood work was done and although I can get to the results, it takes longer than they're willing to wait.

Mar 03, 2015 9:24 PM

My brain is fried for tonight on the symptom list. but at least I have a base file to work from now and this print out will help in my discussion with the doctor tomorrow. Hopefully. I want him to test me for lyme disease (even though I never noticed a bite rash), a couple deficiencies, etc. And refer me to a rheumatologist.

Mar 03, 2015 9:26 PM

The only person who looked at my pain logs was my new doctor. I print them mostly for myself. I update my binder once a month near the beginning so I should really get on it. Then I don't have to look at a screen and wait for things to load if I want to look back. And then all your notes on your entries on this app are printed with the log and you don't have to click on this to see what it said. Can you tell that I'm old school and prefer paper?
I get my lab results printed by the doctor every time I get something done and he doesn't object, getting my results printed from my last doctor was a nightmare so I didn't bother going back any further.
Have a good night

Mar 03, 2015 9:49 PM

I'm old school in paper loving too. Especially when it comes to the toilet version. ;)
My chiropractor looks at my pain entries every time and will reference it the whole time he is doing accupuncture. He's pretty much awesome

Mar 04, 2015 8:30 AM

Aliya, try just taking the most recent printout(s) and maybe the doctor(s) would be more willing to review them. I've found they don't want everything I take in too.

Mar 04, 2015 9:43 AM

The eCB system that gets damaged by fibro is actually the system responsible for 'active forgetting' or, a way of softening painful experiences (like childbirth). It is helpful. How we process and experience pain is what separates us from animals in this respect. .
Focus on the persistent, chronic symptoms you feel daily. Your body doesn't want you to focus on every little thing it does while it tries to help you fight. It does need you to identify the major areas that are holding back recovery.

Mar 04, 2015 11:35 AM

Appointment went well. Dr. Looked over most of the list with me there. He ordered 12 blood tests. I forgot until I was waiting at the lab that I wanted him to test me for mycotoxins. I go back in three weeks. So we'll see. He also put me on Cymbalta.

Mar 04, 2015 11:51 AM

That's good Aliya. Was it as bad as you feared?

Mar 04, 2015 12:23 PM

Um. Yes? Since I didn't expect it to be bad at all.
I am just in a hurry to get my self figured out. I KNOW something has to be wrong. But my husbands job (along with insurance and living location) are coming to a. End in June. So I'm trying my hardest to provide every hint I can so my doctor can help me as quick as possible.

Mar 04, 2015 12:24 PM

I'm glad it went well for you Aliya.

Mar 04, 2015 1:05 PM

Well I'm praying you'll get answers before June.

Mar 05, 2015 1:53 PM

I have a file in my iPad that has a list of everything that I have confirmed diagnosis for. I also have made notes of symptoms as I go along and make certain that I ass any new ones as soon as they happen. I understand it's hard to remember them all when they are so many and it becomes overwhelming... Relax, take some deep breaths and put a pad and paper near you. As you think of symptoms, write them down. I'm certain if you relax and let it happen, they will all come to you. (If you forget any, you can always call the doctor's office back and let him/her know they need to add other symptoms to your chart to help him/her to help you. I know that you can do this... Hang in there, I'll be praying for you.

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