Pain Journals

Discussion in 'Fibromyalgia Main Forum' started by momof471, Feb 13, 2007.

  1. momof471

    momof471 New Member

    Who documents their pain in a journal? Does this help when it comes to the doctor's or SSDI? I'm wondering if it would help me as I am the type to downplay my pain when talking to doctors or others. I don't want to be a complainer. I don't tell how bad things really are. Has this helped anyone?
  2. froggyfog

    froggyfog New Member

    I also down play how I am feeling when at work. Everyone sees me and the one who always has a smile on her face. I have always been outgoing and I refuse this disease to take that away. I maybe feeling like crap but I can fake it like I am feeling OK.

    I wonder too if a pain diary would psychritis(boy..I can't spell anymore) had me do a diary but after I wrote how I was feeling then I was to write something positive for example "I can do all things through Christ who strengtens me" or "Tommorrow will be a better day". I wasn't able to keep it up...but I may start back.
  3. momof471

    momof471 New Member

    I keep a prayer journal,where I record what I am thankful for and the things I need help with. In this I don't put daily that my first thought is going back to bed, maybe I should put it there to. Are these the things that need to go into the journal? Headaches what's hurting, what you were or were not able to do that day? Things you do to help yourself, whether it helps or not? Would you express your utter frustration here and the effects on others around you? Or does it need to be strictly medical as in woke up with headache, took meds, used icepack, etc. Then that doesn't involve what you had to get done getting your four noisy children out the door before you could use that ice pack? Any ideas. I want something that will help show my daily life, but not go overboard into whining. Make ssense? All ideas appreciated.
  4. lgp

    lgp Well-Known Member

    I believe keeping a pain journal or a pain timeline is crucial. Back in 2005 I started a series of vague symptoms that continued through 2006 so in the latter part of 2006 I typed everything (backtracking) and kept it in a file on my computer. When I went for a rheumatological evaluation in 2007, I gave the 3 page document to my rheumatologist and it did aid him in giving me a firm diagnosis of fibromyalgia. Surprisingly, he took the time to read it all very thoroughly and he said he wished more patients would do so. Sometimes, when your time is limited in the rheumy's office, or another specialist, you may forget that you had seen an ENT months earlier, for example. Now, if something comes up, I just amend the file on my computer and it's completely up-to-date. Another reason why I do this is because the last, and worst flare I ever had actually started months earlier with a series of vague symptoms, such as dry-eye, throat constrictions, etc. that at the time were treated seperately, but collectively were seen as the beginning of a fibro flare. Good Luck and write everything down!
    [This Message was Edited on 02/13/2007]
  5. momof471

    momof471 New Member

    lgp... do you think I should go all the way back in my history, even though I wasn't dignosed until 2005? Such as recording the fatigue in my teens and 20's that all the doctor's laughed about? Personally, I think I was showing signs back then, I'm 35 now and I think my injury was just the final straw.

    Huck...It helps to know I'm not alone on those mornings I want to go back to bed. Much to my doctor's dismay after the three oldest are out the door, my little one get's tv time and I get a nap. I piddle around, do lunch, then another nap. then the older three come home and its homework dinner and so forth. At 8:00 they are in bed and I'm usually in between 8:30 and 9;30, got alot on my mind tonight so I can't sleep.

    Thanks for the suggestions and I hope at some point I can help you in some way.

    God Bless

  6. sewcrafty

    sewcrafty New Member

    I have foumd a wonderful medical journal book on web site.

    Itis a Memory Minder a personal health journal. The front of the journal states: A wellness Diary & Symptoms log.

    I love it . It has a place for you to indicate your pain on the front and back of a person, symptoms, weather, date, BP, Blood Sugar,weight, meal section,medications and herbs section,Pain scale and activity section.

    It costs round $15.95 plus shipping. This medical journal great to take with you to the doctor appointments. My doctor was amazed at how the book tracked various symptoms & pain.

    Have a Blessed Day!
  7. lgp

    lgp Well-Known Member

    Hi Momof471!

    I think you should overview your problems--say, write in your journal every few days or once a week and write down how you feel and your symptoms. Here is an excerpt from my timeline journal:
    "...Second week of October--car trip to Boston and walking around city almost kills me. Am in severe pain and exhaustion is horrible. Decide to see internist--she does every test imaginable--EKG, chest xrays, extensive bloodwork, endocrinologist, hematologist (neck nodule) all normal despite worsening pain, now between shoulder blades....appoximately second week of October, night sweats and insomnia start--pain is severe now..."
    I feel as you do that this probably started with me many, many years before. I did experience an emotional/physical trauma in Fall 2005 that really set this into motion though.
    When I 34 I had three children 4 and under (4 yr old twins and a newborn) and a husband that traveled almost nonstop and I was physically exausted--alot! Now the three of them are teenagers, and now THEY mentally exaust me!

    If you do decide to keep a concise pain journal/timeline, be firm and direct with the rheumy that you would like them to read it. When I mentioned to my internist that I did this, she enthusiastically asked for a copy for my regular medical file and when I told her about this message board, she wrote this down too. Some doctors are interested and if you feel the rheumy isn't hearing you, move on to someone else. YOUR time is valuable too and a doctor with integrity will recognize this as well as your seriousness about your condition when they see that you took the time to create a timeline.

    Finally, can I just say to you, with four children, you MUST stop and rest, even for a few minutes or so, to regroup and get through the rest of the day. I really feel power napping is truly under-rated! Do something every day that makes your condition better--whether it's taking a walk (short) or a hot shower. Do it. Make time for it. You deserve it.

    Your friend--Laura
    [This Message was Edited on 02/13/2007]
    [This Message was Edited on 02/13/2007]
  8. momof471

    momof471 New Member

    Sew Crafty... Thanks for the idea on the book, I will check that out now, I've been concerned about keeping things in order so that someone can decipher it. That might be the answer.

    lgp...I'm going to definantly go back and mark down when I started noticing certain symptoms, although it happened over a number of years. SS will be able to pull these complaints out of my medical history.

    Huck... thank you for your uplifting spirit, I see that you've been through alot and when I see someone like that, I wonder who am I to complain! My girls and husband are a blessing to me. My husband works two jobs, since I can't pull that share of the load anymore, hopefully SS will kick in at some point and that will make that better. My girls are the reason I am able to function during the day, without them I could easily sleep my days away. I wonder what I'll do when my little one starts school next year? I do wish I could be more fun and a happier person I don't want my kids to always remember me being like this, I think about that often. We have lots of hugs and kisses and heart to hearts around our house, so I hope that makes up for what I cannot do.

    Thanks for all of the great ideas!

    God Bless
  9. Diva55

    Diva55 New Member

    Funny that I was just writing up mine and for a break read the boards & saw this message!

    My doctor requested that I keep a daily diary, about 2 years ago -he wanted to know side effects & how I coped taking Lyrica. This is no longer relevant to me but you should keep a diary on side effects from any meds.

    I've kept it up now to include new drug trials I want to discuss, supplements I've tried & the effects, also how I progress with eating. Of course PAIN & sleep problems but I now keep these to out of the "ordinary" as putting down all pain depresses me!

    I don't do it on a daily basis but whenever I rememeber. I include, doctor's visits & tests & results.
    I do a new section for each month & give the doctor a copy when I visit.

    It's a good idea to do it but keep it short & to the point as doctor's won't read through a lot! I do bullett points and highlight what I consider to be urgent things he needs to address.

    It does focus your mind, especially if you get foggy! And makes the visit more productive.

    Good luck with it
  10. pearls

    pearls New Member

    I keep several kinds of records:

    1) a pain journal specifically for keeping track of how many Vicodin and Cyclobenzaprine I take. I just use a plain old blank book and write in the date. I write the time of day when I take pain meds so I won't take the next one too soon or take too many in a day. The next day, I write at the top of the previous day's entry the number of those meds I took. I also write in other things, such as how much time I spent walking, if I walked, and if I felt ill, as well as the kind of illness I felt. It is not terribly detailed, though, because if I tried to do that, I'd quit.

    2) I like to keep a printed copy of the journal highlights to take to my pain management doctor. Each week I tally up how many Vicodin I took and write that in bold print. I also write the average of how many were taken each day and underline it. This line also shows the inclusive dates. My doctor likes this because he only has to take a quick look to see what my usage has been.

    3) I also keep a list of medications, which includes the name in capital letters, the size of the dose, how many I take each day and when. It also includes when I started the medication and the reason it was prescribed for me.

    Under the list of currently prescribed medications, I also list anything to which I am allergic, and a whole other list of medications I've taken before, with all the information above plus when it was discontinued and why.

    4) Appended to the medication list is another page on which I list all my contact information (my husband and sons and their addresses and phone numbers), and all my doctors and the most recently seen specialists and other health care providers, including their addresses and phone numbers.

    5) I need to append a list of my supplements, but I haven't done that yet.

    6) When I see a doctor, I list four or five things I want to talk to him about and go down the list with him. This helps him to see that I won't take too much of his time, but allows me to talk about my most pressing problems.

    Some thoughts about this:

    Will this help you with your doctors? I can say emphatically, yes! Most are very impressed and happy about it. The others usually learn to like it.

    As I was going off Oxycontin, I was feeling terrible but didn't know why. It wasn't pain, though. My doctor looked through my journal to see what was going on with how I felt and exactly where I was insofar as my meds were concerned. He was quickly able to determine from that data that I was having withdrawal symptoms. This was easily solved simply by having me go off the Oxycontin at a slower rate.

    As far as Social Security is concerned, whenever you need to prove anything to any agency or court, it is always a good idea to document what you're trying to prove. A journal or notes detailing your pain over time is considered documentation.

    More types of journals:

    a) a "gratitude" journal: this helps you to keep a positive attitude, which is absolutely essential in dealing with your illness. Each day you write down something for which you are thankful, even if the only thing you can think of is the blue sky or being alive.

    b) As I was going through all those tests and procedures to determine what illness I had, I kept a list of the procedures and tests, when they were done, who did them, and what was determined. This came in very handy when I met doctors for the first time and when I needed to fill out those forms each new doctor requires.

    More comments:

    Another benefit of these kinds of journals is being able to go back to see how far you've come. I've been to hell and back again - though I still suffer. It's just not nearly so bad as it was some time ago. However, it is easy to forget, and I still can feel depressed when I don't feel good. Those old journals really tell a story!

    Pearl S.
  11. justlooking

    justlooking New Member

    HI Mom!

    hey I was just reading your post and something jumped out at me and reminded me of my hearing with the ALJ and I wanted to give you some words of advice if you don't mind...

    A HUGE bone of contention with the SSA is when a woman is at home and has small children. They consider that "if" you are able to care for small children without assistance then you can work.
    When I had my hearing I had 2 school age children and one at home (but in daycare 3 days a week). The judge harped on WHO took care of the smallest one and who got the school aged kids ready for school and to school and took care of them after school. Luckily my youngest was in daycare (I couldn't do it all on my own), I had some help getting the kids ready and to school (my husband) and my school age kids went to an afterschool program until my husband got home. I know it sounds CRAZY that the SSA would make a big deal out of this but they do so please be prepared.... The judge told me straight out that he didn't want to give SSDI to a "stay at home Mom". Proving that I wasn't home to be a "stay at home Mom" was basically most of my hearing.

    I know how FM and CFS are, I have them and realize we can do some things ok and other things not so much, but its hard to explain that sometimes to others, especially someone who is looking for any excuse to deny you benefits. If you haven't already, look into ways to prove you have help with the kids.. a Mothers helper, daycare, pre-school, family help a few days a week, etc.

    Hopefully you won't have the same experience with the SSA I did, but it never hurts to be prepared for anything and everything!

    BTW I won a Fully Favorable Bench decision at the ALJ Hearing.

    Good luck and I hope you dont' mind me sticking my nose in.
  12. Shalala

    Shalala New Member

    great idea ... but I have a hard time writing. I guess I can do it on the computer (printer is down though). My DR always asks me ?s that I can't answer specifically (usually I have no idea what day it is even). I have to start one today.
  13. NyroFan

    NyroFan New Member


    I do not write a pain jounal, but do have a 'study book' of things that have posted.

    Pain journals are very good for some people.

    It just is not the thing for me.

    Good luck whatever you decide to do.

  14. Shalala

    Shalala New Member

    Why hide it? That may work against you ;-) If co-workers are asked ... they will say "he/she seemed fine and happy". I'm not saying to moan and groan and such ... even though that is how we all usually feel. I do not and will not hide it. I am in pain.
  15. bewell4

    bewell4 New Member

    when i am overwhelmed with pain!! lol!

    okay, i do have on order that health journal. i am partly excited to keep track. i love that it includes the weather, and the moon, etc, etc- everything you could imagine that would affect wellbeing.

    the challenge is* that...i am so miserable! if i actually sit down and think* about where all the pain is...sheesh! it is literally EVERYWHERE, all the time, bones, muscles, mind, heart, pelvis, know. i have the fear that i will get really** depressed, and also it would take just hours (while in the meantime, i would be going without food and getting really bad brain fog--of course, if i try to do mental activities, sooner or later the brain fog comes...). although, at the same time..i can almost never really stop* thinking about the pain, so maybe it will be an improvement if i can just detail it all at once, then maybe let it go (ha, ha, ha, ha, ha...worth a try) for the rest of the day?

    and*, as well as that, and other things i can't remember right now...oh, like, my hands hurt after typing or writing (they are hurting now, but i am so needing to be heard about this...soon i need to stop and rest or i will be basically crippled for days. hurts to even lift a dish! aargh!! i am only 32! often, i hate* this condition!!! wish i could be peaceful about it, but it just doesn't seem right to feel like i am 80 years old, when i am nnnnnnoooooooooottttttt!!!) (okay, thx for letting me, where was i?? lol)

    yeah-- how do you record your pain without losing your mind or missing your meals, or causing a flare, or etc, etc, etc!!!!

    thanks. sorry to sound like such a whiner...yeesh!
  16. momof471

    momof471 New Member

    Thank you for giving me the heads up on this, My youngest will be in school next year. So the day long thing won't be an issue. My children are in no extracurricular activities because I can't get them back and forth. My children are very self-sufficient, baths, showers are taken care on their own or with each other's help. They each have their own jobs(chores) to help keep things running. Plus my husband is home before they get home from school and goes to his second job after they are ready for bed. Would this hurt me? Or do I just have to be ready for the questions and have the answer's. Also I have an unbroken work history until I got hurt, even with having the children, the funny thing is I resent having to stay home, and not make my part of the income, you know. I'm not a stay at home mom type and to have to defend the whole thing sounds like a nightmare. I need to pass this by my attorney.
    [This Message was Edited on 02/15/2007]
  17. momof471

    momof471 New Member

    I feel that way myself, its hard to get on with things if you have to face each pain and write it down, but I've heard this helps to find patterns. Like I know that when that time of the month is coming that my pain gets worse, I tell my doctor this, but then its hard to tell him in what ways. This is an example. or when you get the cold wet weather, how does this affect me.

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