Hunting & Tracking: symptoms, triggers & treatments - the basics
“How to” 
track symptoms, hunt triggers, decide and follow thru on (preventing & alleviating) treatments.
Updates:
v5 (Oct 10th): Bathing in sadness, resting for a while and then swimming again.
v2-4 (2021-09-19, 10:15): Added lots!...
v4: More on grieving, “fighting” etc. Section on Self-motivating.
v3: More on preventing & alleviating (& healing?) as opposed to suppressing or accepting symptoms & sfx.
Expand ‚blog‘ to a rough overview.
Blog/diary structure:
Sleep comes first, as it is fundamental.
Either rewarding dozing/AuTr or getting up immediately & doing something about the insomnia.
Sleep entries.
Symptoms & their triggers next.
Scaling.
My assumption that I will find a trigger if I look hard enough has been rewarding.
Add how to cope with sfx of anything: dose & times, e.g. tryptophan, encapsulating.
sfx: A brain with pain may be preferable to no pain with no brain. Meaning: It’s harder to pinpoint & alleviate symptoms with a brain dulled by pain killers. Pain killers do not kill pain, they suppress it. Trigger & treatment hunting generally will be able to alleviate pain.
However those of us with less pain tolerance may prefer „less brain“.
Keep ‚killing’ separate.
Med detox. Being sure they are having fx. Not waiting long for things to work.
Coin further phrases.
All treatments can have placebo fx and/or nocebo sfx. Does it matter? Reduce?
How fast should we progress with changing treatments? 3 modes: 2 weeks. 3 months. 1 day.
Contact Mandy, C/TJ, Dooi
The lists of causes/triggers, symptoms & treatments can provide us a bit of orientation.
They can help us even if we don’t change what we do, by changing our mindsets,
e.g. “acceptance”.
But we can normally only improve our symptoms if we apply what we find, to change things.
Some may say they are too old to want to spend time & energy on improving symptoms.
Symptom tracking:
What symptoms (exactly) happen when (exactly)?
Just because a symptom is listed as one of the “200” it may still be something else than fibro.
Just because a symptom is listed under “possibly fibro” doesn’t mean it’s unchangeable fate.
If we are prepared & able to spend time & energy on improving symptoms
each single one is worth looking at and revisiting again and again.
Even if body fatigue and brain fog are robbing time & energy, setting priorities may help bit by bit.
Keeping written record of it, e.g. symptom & treatment diaries can help this, using abbreviations.
If we can’t ourselves, maybe someone can help us - our loved ones or some mentor.
There are ‘pain tracking’ tables which very much need to be adapted, for me they’d need more detail.
Maybe my blog can show roughly how it can be done, esp. now it’s becoming more systematic.
Details on my blog structure and how it would look in table form at the bottom.
Trigger hunting:
What might be the trigger(-s!) of a certain symptom?
Looking hard enough for triggers may be greatly rewarded with progress.
Causes of symptoms can help look for guidance for triggers & treatments in the right place:
It’s good to check thoroughly if there is a cause of a symptom outside/independently of fibro.
The list of hypotheses of (“10”) possible causes of fibro can give a vague idea of treatment types.
E.g. feverishness may feel ‘inflammatory’/AI: cryotherapy and serrapeptase may be things to try.
One very likely mid-term trigger independent of fibro may be the side effects (sfx) of treatments, esp. meds.
In this case the question is if we can adapt/reduce the dose and/or times of taking things, or changing the form, e.g. capsules instead of tablets (or pulverizing & encapsulating them).
A brain with pain may be preferable to no pain with no brain. Meaning: It’s harder to pinpoint & alleviate symptoms with a brain dulled by pain killers. Pain killers do not kill the trigger of pain, they only suppress it. Trigger & treatment hunting generally will be able to alleviate pain by stopping the trigger. However those of us with less pain tolerance may prefer „less brain“. 
We can research some or all triggers, unless we want to stick to the mindset that “it’s all fibro”.
We can’t do everything at the same time. So it needs time. And/or others:
Our time and the time of people who can empathize & help us think;
these may be friends, loved ones or physios during a treatment appointment, even docs;
esp. if we ask specifically and learn to describe & track our symptoms vividly and in detail to do so.
It also helps to focus on a symptom that seems most relevant at the moment, i.e. set priorities.
Either because it may be easy to resolve (e.g. ear plugs, eye masks, clothing, bed clothes).
Or because it is very debilitating and maybe central to other symptoms.
It helps to differentiate and describe very exactly to ourselves and to others what we exactly mean.
(E.g. What exactly do we mean by 'fatigue'? (11? types).
Fatigue’s treatments may vary according to its type: tiredness, no energy, Ache, mental, or brain fog…)
If we have neither time, energy nor helpers, then acceptance etc. is the only way to get a bit of a hold on it at all.
This is always best for the parts of it we can’t deal with at the moment, in extreme cases might be the whole of it…
Treatments
Grieving & self-motivating; deciding & prioritizing; testing; preventing & alleviating.
Motivating ourselves, while and after “grieving” (Bathing in sadness for a while & resting and then swimming again):
Grieving about our condition are “stages” or praps better “types of grief”:
shock/denial, anger (& fear) & blaming (esp. docs & researchers, or ourself), bemoaning, comparing & idealizing the life that seems “gone”, maybe we feel like bargaining, praps like a child; depression; finally hopefully acceptance, letting go, finding a new way of coping, adapting to the new life and making the best of it. (Kübler-Ross; Kast; Spiegel; & Bonanno)
All of these are an important part of coping, so it’s good to let ourselves feel most of them for a time, whatever order, alternating, however strongly.
The faster we adapt, the faster we will get moving - moving to get a life.
Fighting against our condition as an “enemy” may be tougher than self-caring & love for ourself.
Self-motivating depends on having or getting an active attitude.
Our attitude can tend more to pessimistic and state-oriented or to optimistic and action-oriented (Kuhl).
Our starting point depends on our personality development, but studies show we can practice and learn the other.
The serenity prayer (serenity to accept; courage to change; wisdom to distinguish) shows how both help.
To become more action-oriented, if nec., we need to decide to, to associate this positively & repeat both.
We need to love doing it, use “pictures” to convince ourselves, let our hearts follow. Helped by relaxation.
Have faith in it, hope, try. Learn techniques to tolerate the pain and the struggle.
Swing between carrying on and reminding ourselves of the positive goal.
If we are more state-oriented (feel powerless, helpless) we need encouragement & reassurance from others (family, friends, counsellors) to remind us we are not powerless.
Sometimes we need to croak like a frog, but we can fly high like an eagle & change our days.
To stop us from hesitating, becoming vague or giving up, we need to keep in contact with our feelings, learn to self-reassure, use positive fantasies of our goal, split into baby steps, practice patience, learn to control any feelings of rejection and shame.
Know what we want and keep a positive mindset by spending time with nice things.
Not suppressing important negative things like grief.
Positive thinking can help us if we are action-oriented.
If we are state-oriented we may need to criticize/punish ourselves a little bit, e.g. with “bad smileys”.
Fear of failure can help motivate, but only if it’s not too strong: otherwise (learn ways to) self-reassure.
Taking self-responsibility and self-advocacy can lead to self-confidence & success, being able to live with things going wrong or even “mistakes”. I still need to find myself, my own way, tho.
It helps to advocate our new stance publicly.
Deciding and prioritizing:
Which treatment might be the next most successful for a certain symptom in my body?
Don’t forget there are 100s! on my list - have we really seen, appreciated & tried all we can “afford”?
Most of the symptoms & treatments are actually already intertwined in the lists, see below.
We can suppress, alleviate, prevent or praps even heal.
Which of these is my priority? Suppressing makes everything else harder, healing, alleviating & preventing.
Suppressing may be able to heal acute illnesses, but very likely not chronic ones.
Healing may come from alleviating & preventing for/after a while.
For healing good PT is best; for preventing: diet, environment; for alleviating: supps, herbs, PT; for suppressing: meds.
The less we work on alleviating, the more we’d need to work on preventing and vice versa.
Testing:
What effects (fx) and side effects (sfx) might be preventing or alleviating which symptoms?
Preventing means identifying and trying to avoid the trigger of a symptom.
Usually self-treatment, hard to get help for, unless from close people or fellow sufferers. Mainly:
-
food = the various diets: #3 above,
for general health, general fibro triggers or specifically GI problems, and - sleeping & weather conditions/environment = bed, clothes, light, sound, seats: #4 above.
- Pacing of activities & actions (e.g. poses), incl. rest; adjusting the people & things there. (#1)
Alleviating means trying out all relevant kinds of
-
physiotherapy (#2 above), all paced gently, carefully, starting very short: minutes.
Many of these are all-encompassing, so may alleviate Ache and pain as well as sleep, energy etc.
Expert physio (by a listening, knowing, gentle PT) and our self-treatments need to go hand in hand.
If nec. all youtube physios instead of live experts, i.e. increased self-treatment.
If we find the right sort of PT it may be the best way of actually healing some parts of our body. -
meds, supps & herbs (#5 above, already roughly ordered according to symptoms there).
Too specific intertwining cannot do the amount of fx, sfx and personal differences justice.
Each of us has to try to find their own way or ask one another for specific ideas.
Both in varying ways/extents using our minds to change how we do things (#1 above).
Killing = suppressing symptoms - usually with meds - means giving up on trying to find the trigger, which has the consequence that our body still has to cope with the trigger, but additionally also with the med which is suppressing it. Doing a complete “med detox” may actually be having a real effect, esp. if we’ve been taking quite a few things for months or years and are no longer sure what they are doing. We need to know how to wean off them: A good general sense of our bodies, the experiences of others incl. docs can help with that.
But we can always try to reduce one of our pills once in a while to see if we are right in assuming they are helping.
All treatments can have placebo fx or nocebo sfx. It’s good to know that placebo or nocebo may happen even if we are aware of them. The question is: Does it matter? If we take 10 things that don’t work and then one does…
How fast should we progress with changing treatments? It depends on the med & our body.
I’d recommend 3 modes: 2 weeks should be enough for most meds, supps, herbs, physio, therapies. For some, like diets, 3 months. For some 1 day may be enough, e.g. strong sfx. Or if we know how to listen to our body well or it reacts very quickly or we have got most things sorted out and know exactly what is happening and why.
Blog/diary/chart structure:
Sleep comes first for me, as it is fundamental.
My older technique (not having alternatives) was rewarding dozing or relaxation (autogenic training) by usually counting it as sleep. Remembering that we often dream that we cannot sleep, but actually are sleeping much more than we think. I often guess the durations afterwards roughly of course.
More recently (having found supps/herbs to help), I get up if I feel awake & do sth. about it, which now usually works, but didn’t use to.
Sleep entries: Time & dosage of supps, copying that over to the supps entry. Times of beginning & end of sleep. Plus waking up, with the minutes I am up. Usually trying to keep it down to 3’, or if I do something like cold showering down to e.g. under 10’: It has to be something strong enough to reverse the effect of staying up longer, which cold showering <1’ usually is for me. Plus (abbreviated using templates) a note of symptoms & treatments (pee, drink, hunger, dry mouth, GI, pains). More self-discipline by writing down the time & durations exactly.
Doing this on paper could mean a chart with a row with the start of a sleep interruption, the symptoms & treatments in columns and a space at the end to describe anything in detail.
Symptoms & their triggers comes 2nd.
For this, even more than with sleep, it’s helpful to scale the intensity.
(I use % for how well I’m feeling, 90% is my “new normal”, and a pain scale of 0-7 - crying or moaning etc.)
I separate overall Ache due to “activities” from single pains due to “actions”, e.g. poses.
That occasionally means doubling some, e.g. talking might cause Ache, but also jaw pain.
One activity, with the duration, can lead to a certain extent of overall Ache to scale.
One action, like sitting, can lead to many single pains, which need to be addressed, so scaled and noted, singly.
If it’s not that nec to scale precisely, it may suffice to use symbols (I use a combination of 
) and just be more precise when nec. That way I can clearly get a quick impression of all of them, as there will be many.
On paper this could mean a chart with one action per row (3 poses); all relevant body parts (may vary), stiffness, certain activities which may cause a general ache, but also single pains, in my case like walking, cycling & talking), and praps something specific to ourselves, our form of FM and our co-morbidities.
Treatments
Self-treatments: To reward and cheer ourselves on it’s helpful to write down (maybe for others too) the self-treatments we do and how long for.
The minutes, but also smileys for certain goals, regularly adjusted according to what kind of a phase we are in.
Our self-treatments may include “self-discipline”, relaxation, exercises, other physio with cold/heat or electricity etc., researching, thinking/writing, checking (e.g. blood pressure), in my case now filling powder into capsules.
On paper/chart I’m not quite sure which way round rows and columns’d be best, may not matter.
Therapy: Then it’s good to note the therapy appts we go to, whether physio, psycho or docs and how they helped or didn’t.
Pills: Noting every med, supp & herb we take, what dose & what time, whatever it’s for, will help think about the sense of using them. This can be divided up into what we do regularly at the moment, which needs to be adjusted regularly too, what we are adding and what we are planning on doing next: When we research, we may find treatment ideas we’re not quite up to at the moment, or we need to see what’s working for a while, but if we note these and keep them on your radar, plan in time when to try them, get them going (phoning for appts, ordering etc.), put them into a good order.
As said above doses may need to be reduced or split up to improve sfx.
But if something isn’t working visibly, but also has no sfx, increasing the dose may be good (in my case passiflora).
Keep mid- and long-term track
To keep longer term track of what’s been changing it’s helpful to summarize our week and our feelings about it (like my ‘highlights’, sometimes lowlights) and also our months (like my blog summary) so that we don’t have to read everything in detail, unless we are looking for something specific which we hadn’t realized at the time.