Can someone share how exactly you are doing that? What are these pain dairies and journals? Can one create an online journal that I can share with my doc? What parameters should be noted? I have some thoughts in mind, but wish to ask your suggestions too. Any one who is a coder/ programmer/ good with tech? I've an idea.
I write a daily blog which helps me as a symptom, trigger, treatment, development, happiness & self-care "diary".
I started more narrative 3 years ago. Kept changing it depending on what I was focusing on. In the last year I've developed a long template very specific to myself and written in a way that I fill in what's important, to save time, with those details "hidden" for anyone to click on that might be interested. Despite 10 new symptoms cropping up this year, I don't need to change that much any more, usually. My fibro, jab/MCAS and other symptoms are basically well under control. Big exceptions are generally my energy, where I've gone into increasing detail as I've analyzed various energy types. My appetite/weight I now need to note daily.
Energy I once turned into an excel graph for a few months, putting it in relation to triggers and acupuncture treatments, which was a good help then. I've got a pretty techy mindset, not for coding tho, but have never felt the need for further tech stuff, because symptom tracking is a matter of prioritizing and detailing, creative thoughts.
My treatments nowadays only need small adjustments or I do them automatically. Lists of my self-treatments, supps etc. are semi-"hidden" on the blog for my reference, to make sure I don't forget things in the mid-term.
New symptoms are nausea for the sun and neck pain from the cold. They have come from being out in the garden much more, cos I've realized light & lots of fresh air greatly have doubled my energy and light movement rather than resting is better for stiffness and pain. These are things I think about, write down and immediately try out things.
I do various tests what might be the exact trigger constellation, for prevention, like looking at bright sun doesn't trigger nausea. To prevent the neck pain I was thinking about a hot water bottle, but today it was not much above freezing point at 7 and I'd forgotten to make the hot water bottle, so just pulled both of my hoodies around my head and neck and was fine.
Nowadays I know my stuff so well, that I just report them on my blog. But when I was foggier or less experienced I needed my blog to remind me and habituate stuff better.
Sharing with your doc? We're veery lucky if we have a doc that is interested in our symptom tracking. Mine are nice people and fairly thoughtful, know a little, willing to learn, but all of them want/need me to put my symptom analyses into praps 1 or 2 sentences. Only the more thoughtful ones can go up to 10 sentences (like my onco the other day, or my sleep lab psychiatrist). So my blog and this forum help me describe, compare, analyze and put things in shorter and shorter ways.
And essentially me talking to docs is away of developing my own ideas, same as my blog.
My ex-pain docs gave me electronic questionnaires with pain scales and how I feel about my pain which took 20-30 minutes to fill in. By the 2nd or 3rd time I did this at various docs, I realized they don't care about it much at all. It might have become relevant if I hadn't had severe side effects from their meds. But those questionnaires have nothing about triggers, treatments or side effects in them. So even if such meds could influence my pain, they cause triple trouble elsewhere in my body.
Basically noting your pain level (the 0 - 10 scale) and type of pain at several times throughout the day. making note of the time is key to possibly finding patterns in your pain. Make sure you use descriptive words when you make your entry.. things like burning, stabbing, aching, etc
if you take meds, when you take them would be a great time to make note of your pain levels, then again a couple hours later (after meds have had time to kick in)
does not have to be anything fancy, and I see no reason why you couldn't use something like go.. ogle docs to do this.
If you do a search, there are templates available out there that you can use.
Fully agreed: finding
patterns in our symptoms is what helps.
The descriptive words give a clue as to the origin, which gives ideas which docs/therapists are relevant and what to do. Burning pain may be neurological or in my case mast cell / histamine issues (MCAS), stabbing is musculoskeletal local pain, and aching is related to fatigue and overdoing it. I separate these types and find the treatments of each type which help me are totally different to those of the other types. I mainly try to prevent triggers, and if that doesn't help then use self-treatments to target the causes, not suppress symptoms.
on further thoughts keeping a journal of your pain etc may indeed be a good thing for your doctor but maybe will make you concentrate on the pain more..
I agree if it is done with an anxious obsessive attitude that can get to be a problem. Doing body scans we learn to check in and turn to each body part, whether pain or no, and if there is pain we say 'hello' and go on to the next. Similarly when we note pain types and amounts, we can use that neutrally or even to "let go" - cos we've written it down, got it off of our chest.
BombayMom, you have asked about pain, but fibro is made up of widespread pain, not necessarily severe, but also the ACR criteria list 6 further symptoms, that need to be pretty severe for us to be diagnosed correctly. So I prefer to call it symptom tracking and analysis rather than just pain. Also because the pain is not a problem for me, as I'm pain tolerant. I've written a long post/thread on symptom tracking on this forum.
a description of the pain and its locations and the strength say on a scale from 0 to 10 (most doctors understand the scale) would help the doctor
In my experience this would only help so need to be done very irregularly. Burning pain would praps need to be sent to a neurologist and there the locations are relevant, not the strength(?). Once. And at most if a location changes. Stabbing pain can be checked with scans, usually not finding anything, strength irrelevant, next would I recommend be some manual therapist, but not a doc. Pain strength, whether of these local types or an overall ache, is only necessary for reducing pain with meds (or supps), but that needs to be balanced with all the side effects. Or rather I recommend not to use anything with more than mild side effects, because moderate side effects can build up dangerously without us realizing, so definitely also log those.
I can't recommend the normally available pain templates, I don't think they can really help anyone, let alone me, they are extremely primitive and beg the point.
But I'd be interested if they have helped anyone and how. Praps as a starting point for own ideas, if there aren't any.
