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Symptom Journal:


lalalisa
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Hello!

Recently I've been making an effort to be more faithful in journalling my symptoms. (Lately I've had many new symptoms along with some old one returning) I seem to have a journal for sleep patterns, blood pressure, overall how I'm feelings, stomach issues, etc. I'd like to somehow combine these together.

I really want to be able to see how I change as I journal. Whether it's starting a new med and keeping track of how I react to it to just how hungry i've been and practical things like that.

Any ideas? I have made an excel spreadsheet to keep track of my blood pressure. I would also like to come up with some sort of graph that keeps track of my energy levels, etc. (I'm thinking of pinpointing my energy level with a number on a scale from 1-10 with 10 being energetic)

This probably sounds confusing but any ideas would be greatly appreciated!

Thanks again,

Lisa

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It sounds like your heading in the right direction but it's going to be a lot of work. I would probably make up a spreadsheet & known table of symptoms.

I'm not sure if I would start a seperate spread sheet for new medications or not but definitlely document how your feeling on the symptom spread sheet and you should see a difference if any otherwise it might get to confusing.

Definitely a seperate spread sheed for your vital signs.

But sounds like you pretty much have it figured it out, maybe you could sell it when you get it perfected :)

Personally I just keep a daily journal when I'm at my worst; noting symptoms, blood pressure and current medications. Also if there has been any major changes to my diet or health.

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Hi Lisa,

I am doing something similar to this. I have a chart that I kinda adapted from something one of my Dr's gave me for a different problem.

I can try to email it to you if you'd like. If you are interested email me at elpizo@bellsouth.net and I will try to attach the file.

I keep a separate chart for vitals and then I keep track of my symptoms and my menstrual cycle on another chart. What I did was list my top troublesome symptoms and assign a code for them.

For example Tachycardia= T

Migraine= M

Syncope=SY

Pre-Syncope= PS

Then I would write the code in the given day.

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Lisa,

You are too organized for me! Excel! You go girl!

I just use a little teeny calendar and write little notes about the day. I put in med changes, any exercise, PT, major changes, symtpoms, etc. But it's a mess and not exactly easy to review. I have one for each year and I find I'm digging through calendars trying to find things about a med I tried or this or that.

So, when you and Pooh figure out a system will you let me know!!!!

Oh, and do you have MedicAlert? They are coming out with a FlashDrive that you can use to chart your vitals, meds, etc. and maybe it will have a way to do a symptom log and such. It is going to cost about $40. I think it would be worth it though to have all that info. in one place.

Good luck!

Emily

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I need to be more organized with tracking my symptoms too..right now I do something simular to Emily..I have a date book that I write my meds in and a general summation of my day...my ratings consist of BAD, Blah, Icky, Blah/Ick, BAD/blah, and VERY rarely "okay"..meaning I felt semi-human..I'm currently teaching my doctor this system of symptom tracking...I've also made him familiar with the term "POTS hole"...he got a kick outa' that one. :)

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when i was doing my pt exercises (at their gym i mean) i had made myself an excel paper with exercises and how long it took me to do each exercise and how i ffelt before and after (by giving a mark on how i felt) and how long it took to recuperate from an exercise (we give marks from 0, most bad, to 10, the best). i think you could do that in trying meds as well. my pt checked my marks every week (until she decided it wasn't safe for me to exercise anymore).

good luck lisa, hope this helps you.

oh and in case you didn't know: i'm overorganized, i have to otherwise i'll be a mess and forget where i keep everything!!!

corina :)

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Um, you mean I have to remember how to use Excel now???? I will be really needing some brain power for that, as I haven't used it in over seven years! I don't even have it on my computer!

Oh, next, please don't tell me that I need to be using SPSS to run stats on this stuff! :)

Okay, I'm way to sassy this morning. That's really supposed to be Steph's job! :wub:

Emily

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I have kept Excel charts and graphs for my doctors and for when I went to Mayo.

I was able to show data that coorellated with nausea levels and activity levels. I think that it can really be a useful tool. Here is what worked for us:

Going across from left to right:

Date, Time, Activity, BP, Pulse, Nausea, LHeaded, Cognitive, Headache, Shaky, Chills, Vis/Sound, Flulike, Fatigue, Dizziness

For the 10 symptoms I experience, I entered the severity:

0-Symptom Absent

1-Symptom Present

2-Symptom Moderate

3-Symptom Limiting

4-Symptom Debilitating

From there, you can graph them quite easily. I even made an additional row to combine the AM symptoms, then the PM symptoms. I made a graph of AM nausea vs PM nausea.

I find this is good because it is such a hard syndrome to explain even to docs who are trying to understand. Also, it is easy to get buried in paperwork with this syndrome and it is great for docs to see at a glance what you are talking about.

Also, you can see for yourself the rise and drops that you experience!

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OMG, where do you guys get the energy to do this stuff? It makes me exhausted just to try and figure out your charts, let alone do my own... :) Do your doctors really want this incredibly inticate stuff, or is it for your own sanity to track things? I probably sound really weird or insensitive or boorish here, but man I just can't see writing down every symptom I have every time I have one, it's all I'd ever be doing. Somedays I am sooo glad I've never made it back east to see doctors, because I could never be more concise than, feel like crap, feel a little better, really feel like crap.....etc. I am amazed at the organizational skills you guys show. I just don't think my brain could do this at this point. whataduhmorgan

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I don't keep track of all of my symptoms. There is no way!!!

I was asked what the top 3-5 most bothersome & troubling symptoms were and I was asked to keep track of those. Generally speaking, I only note whatever bothered me the most for 3 or more days in a row. I always have Tachycardia so I only note that if it's exceptionally bad or causes an ER visit or a bag of saline.

If I pass out I note that. Otherwise, my Dr's understand I feel presyncopal most days and I have other symptoms. It's too confusing to chart all the symptoms and if you chart them all you can't make sense of the chart very well in the end because it's too full and there is too much stuff to look at.

My Dr's all say it's very helpful to them though. And, I do note if I add a med or drop a med and I will note any new symptoms I get in connection with that.

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I think I'm with Morgan on this one! It would take more energy than I have in a day to do all that charting and keeping track! I like your system morgan--crappy, crappier, poopy, ya know...that sort of thing! :)

I commend you all for your organization skills and persistence! I am soooo disorganized!

Emily

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Lisa, you are such an inspiration to me!! What a great idea to keep a journal of symptoms, BP and heart rate readings, and meds and their effects. I think this may help me when I see a new doctor Monday. I've jotted down BP and heart rate readings, but I've been on so many meds and had such terrible reactions to some of them, that it's sometimes hard to remember which one did what. I am going to follow your cue and make a list of symptoms, meds, reactions, etc. that I do have memory of and take them with me Monday. I think it will do one of two things: either make the doc think I'm a hypochondriac or it will help him to help me by seeing the "big picture".

I actually kept a list of BP/heart rate readings and symptoms for my oldest son recently and took it with him to see a peds cardiologist. It didn't go over too well with him. He rolled his eyes when he saw me pull out the list. He turned out to be a real jerk, and actually got several complaints to the hospital system from other folks besides myself about his style of practice (or lack, thereof).

Anyhow, I'm sure any doctor worth anything would really appreciate a patient who keeps thorough notes about their symptoms and meds, etc. Good job!!

Melly

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Thanks for your replies and ideas.

I pretty much have to journal because my brain is so foggy that I can barely remember what my day was like the day before (much less the week before). :rolleyes:

Kitsakatsa - I appreciated the specifics you gave regarding your journals and data. Great ideas!

Thanks and keep the ideas coming!

Lisa

Poohbear, Go hokies! (are you from VA?)

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Lisa,

I don't live in VA now but I grew up there. I have lots of friends and relatives still in VA. Gotta root for my home teams though!! :D

Thanks for your replies and ideas.

I pretty much have to journal because my brain is so foggy that I can barely remember what my day was like the day before (much less the week before).  :rolleyes: 

Kitsakatsa - I appreciated the specifics you gave regarding your journals and data.  Great ideas! 

Thanks and keep the ideas coming! 

Lisa

Poohbear, Go hokies! (are you from VA?)

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