Symptom/pain journal

[Spydre]

Was just wondering whether people here journal their symptoms and/or pain regularly. My husband thinks I should, but then I would end up journaling something every day, so it wouldn't really be a news flash. As it is, I tend to to just journal when I'm having new symptoms or an exacerbation or something I want to ask my neuro about. With start Tysabri in a week and half though, it's something I've considered a little more, so I can track any changes in how I'm doing day to day. I'd like to get your take on it.

[Just a small town girl]

I keep a journal that has all of my conversations with my neuro, the medications I'm on with any side effects and any relapses that I have. For relapses or pains, I don't tend to write in it every day, I just make a page entitled whatever is going on (for example Ice Pick Headaches), with a begin date, a description, what my neuro's office said about it, and then eventually an end date. If things get more intense I just add an extra line explaining what changed and when.

Just know that it really only matters what's helpful to you. I do mine this way, because every 6 months my neuro asks me what symptoms I've had in between visits and this way I just go back to my last visit and then read the headings off each page which has duration, etc.

[SNOOPY]

I do journal but I have never written anything about this disease...I haven't even thought about journaling about the disease or my symptoms. Apparently, for me, this disease isn't that important

[Lori Lee]

I do not have a diagnosis yet. I do find it extremely helpful to journal my symptoms.

I went from August 2010 to Dec after my first "flare" going to multiple providers expecting they would ask the right questions. I was frustrated after each appointment because I felt I wasn't conveying what was happening with myself very well.

I started in Jan of this year and at the end of the day I would write everything down for the previous 24 hours. I also wrote down my history for the last 20 years.

I took this to my PCP for my records and he was very interested in it.

I also brought it to my neuro in April and she listened to me read the highlights and promptly set me up with the MS specialist I saw this week.

I was in the hospital in May and my PCP brought my notes to the neuro on staff at the hospital. So he gave them some importance.

I will say it can become a little cumbersome after awhile because it can become your focus. So I think now I have enough history that I only right down new things or things that really cause a problem.

Such as grabbing pains in my legs that greatly affected my ability to walk. My PCP started me on oral Pred 40mg. I did journal over those weeks but as things have slowed down. I just write as things show up.

I also write about the Dr visits so I can keep up with it all.

Sorry this is Long.
Blessings,
Lori

[KZajon]

I do think journaling helps. mostly when you wish you had done it when you need to remember something!! (and we all know how well remembering works)

my problem is I do it for a period of time and then I 'forget' the routine of doing it. and then have an awful time getting back into it.

[Shallwearpurple]

I am keeping a symptom journal in addition to adding doctor appointments/tests/etc.

If I don't keep a journal, I won't be able to tell them when this symptom started or another got worse...how long they lasted, etc.

I usually journal every few days right now and say this or that has been going on since "add date" and is continuing, getting worse, getting better....

[lemstar]

I keep a journal to keep track of when symptoms appeared, or changed. I know I can't remember it all! It has also been helpful in this regard:
I noticed an increase in numbness in my left leg and foot, and wrote it in my journal. Every time I noticed an increase in symptoms, I wrote it in the journal, along with a note that there has been no remittance of symptoms. Then I realized that if my symptoms actually got worse every time I have written that they got worse, that I would be very much worse than I am. It made me realize that my symptoms wax and wane; symptoms change from day to day, and at times seem more bothersome than others. The fact is that my sensory symptoms have indeed gotten a little worse over time, but not as bad as I had been thinking.
My neuro had said that this fluctuations in symptoms is not a flare, but rather how my MS manifests itself, sort of like static.
Journaling helps me keep perspective, and have reliable info for the doc when appointments come.

[mtnwillow]

I keep a daily health journal. Sometimes when I feel like things are worse, I can flip back a few weeks or months and compare symptoms. I keep an on-line journal of MD appts, diagnostics and procedures. I use this one to keep track of appts, new diagnosis and treatment plans. It also comes in handy at Tax time to track milage and expenses.

[jburkart]

since I'm always around a computer, I installed Bento on my laptop and built a custom form to keep daily and incremental recaps. Also putting together a personal website/database with similar capabilities. I was hoping to be able to draw patterns from the data, etc but my problem is that I don't completely understand the symptoms yet, nor do I know what's normal and what isn't. I'm getting frustrated with the whole thing and often don't bother to enter anything.

[wassons5]

I started keeping a pain journal 3 days ago. I write down my pain level and what I take to help with the pain. Sometimes, not all the time, I will write down the kind of pain I am having.

And in my calendar notebook, I have started writing down my symptoms for my Nuero. I think it is important to keep a journal. Especially if something new happens to you.

[lifesjustgr8]

I started keeping a journal when I was diagnosed in 2003, but it is not daily, but more of an 'occurance' journal. I record test results, questions for dr appts, symptoms that appear and stick around for more than 4-5 days, or 'weird' stuff that happens. I have kept track of when I started using my cane and frequency of use, my walker, when and what caused me alot of fatique, when I fall, hospitalizations, etc. It was extremely helpful when I finally had to go on disability - made it much easier to answer all the questions and dates for claiming social security disability.