How to grieve, self-motivate, track symptoms, hunt triggers, decide & follow thru on treatments

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
See also the "spoilered"/structured version ... shall I delete one of these?

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 decide to not spend time & energy on improving symptoms, e.g. if they aren't that bad, and keeping an eye on triggers is enough.
These thoughts of mine - a result of the way I've learnt so far to tackle it all - might help someone...

💥Grieving & self-motivating; 💥 deciding & prioritizing:

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 & prioritizing:
We do this all the time, whether symptom tracking, trigger hunting and trialing treatments or doing nothing apart from suffering.
Sometimes all the symptoms seem equally important, sometimes we can see a priority (in my case: insomnia as a symtpom.)
Sometimes it may be a whim, spontaneous, sometimes we could throw a dice.
The more we get into it the more we can play on all courts.


💥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 (JayCS's fibro-)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. my "What 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


💥testing; 💥preventing & alleviating.

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”?
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.
 
Last edited:

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
This is the "spoilered" version of my long post... Shall I delete one of them or...?

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 decide to not spend time & energy on improving symptoms, e.g. if they aren't that bad, and keeping an eye on triggers is enough.
These thoughts of mine - a result of the way I've learnt so far to tackle it all - might help someone...

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 & prioritizing:
We do this all the time, whether symptom tracking, trigger hunting and trialing treatments or doing nothing apart from suffering.
Sometimes all the symptoms seem equally important, sometimes we can see a priority (in my case: insomnia as a symtpom.)
Sometimes it may be a whim, spontaneous, sometimes we could throw a dice.
The more we get into it the more we can play on all courts.
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 (JayCS's fibro-)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.
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. my "What 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…
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”?
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.
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.
 
Last edited:

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
761
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Thank you for putting so much effort into this, @JayCS ! A really useful resource for anyone trying to figure out a management and self observation strategy that they can work through. Really great advice.

On the which one question, I'm kind of partial to the 💥 and you've broken it all down beautifully, so I don't think you need to worry about the potential overwhelm for readers!
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
We - incl. research & us ourselves - are in a chicken-and-egg-dilemma: Any biomarker, symptom etc. that may be present can be an effect or a cause or both, or a vicious circle.
The 2012 editorial by Ann Gardner in Nutrition “Fibromyalgia: unknown pathogenesis and a “chicken or the egg” causality dilemma” may be referring to that.
Sort of everyday example: If we are depressed, is this an effect of the fibromyalgia (or it’s pre-form) or part of its causality?
 
Last edited:

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
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Sort of everyday example: If we are depressed, is this an effect of the fibromyalgia (or it’s pre-form) or part of its causality?
I often ponder on this, having struggled with depression for far longer than fibro. Interestingly, I had dinner with a woman who has become a close friend the other night. She also has fibromyalgia - going back far longer than my own. Interestingly, when we talk about my experience of depression, I realised that she couldn't relate at all. She experiences feeling low alongside her symptoms, but couldn't grasp the enduring nature of depressive episodes, that they are not necessarily related to any external negative event, or that it isn't something you can just snap yourself out of. So, to me, I feel that my depression is a separate presence - one that many well be a factor that influences my fibro, but isn't a symptom of it. Of course, it's complex, we are all different, and I can't know for sure!

I just re-read your post, JayCS. Such fantastic insight and comprehensive advice. Some things jumped out at me on second pass:

Fighting against our condition as an “enemy” may be tougher than self-caring & love for ourself.
For me, 100% true.
Know what we want and keep a positive mindset by spending time with nice things.
I'm leveraging this as justification for my pretty shoe-buying habit 😂
It helps to advocate our new stance publicly.
I also felt that this was a very important step for me.
Looking hard enough for triggers may be greatly rewarded with progress.
Another 100%.
We can ✴ suppress, ✴ alleviate, ✴ prevent or praps even ✴ heal.
🙌 Absolutely!
 

sunkacola

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She experiences feeling low alongside her symptoms, but couldn't grasp the enduring nature of depressive episodes, that they are not necessarily related to any external negative event, or that it isn't something you can just snap yourself out of. So, to me, I feel that my depression is a separate presence - one that many well be a factor that influences my fibro, but isn't a symptom of it. Of course, it's complex, we are all different, and I can't know for sure!
This is how I see things.
I know for certain that my depression, which dates back to the age of 12, is not a part of fibromyalgia. My feelings of discouragement or disappointment at times if I cannot do what I want to or planned to do that day are certainly fibro-caused. but Depression is something entirely different, and a person who has not experienced it will not be likely to understand the difference.

People who say they are "depressed" because they didn't get the job they wanted, for instance, but who feel all normal again the next week when they get a good job, have not even come within shouting distance of feeling truly depressed. Those of us who have, unfortunately, experienced true clinical depression, especially if severe and long-lasting, know the difference. But it's not easy to describe. It's another one of those things, like having fibromyalgia, that is not going to be understood by many people. My depression is a separate thing from my fibro, entirely.
 

JayCS

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Just to make sure my example above isn't being misunderstood :cool: I'll similarly expand my experience again: I meant only depressions that start with the (build up of the) fibro.
3 people presumed that of me (the first psychiatrist, rehab doc/orthopedist, Christian therapist). So I spent a lot of time in the first months arguing: Maybe you get the impression that I'm a bit sad when I'm trying to communicate my symptoms, but I'm not, considering, & even if, it is not the reason for my fibro, it is caused by it. Needless to say, none of these believed in fibro, even after it being diagnosed, so were looking for psychosomatic stuff (somatoform). And I dropped them fairly quickly and after further similar experiences have realized I need to keep clear of most orthopedists and Christian therapists. But / And my sleep lab psychiatrist later swore no way do/did I ever have a depression since he knows me (also since then), and would write that in a report if ever necessary...
 
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Jemima

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That's very interesting. Well done for standing your ground!
 
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JayCS

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What makes a good fibro Warrior? What are we Fighting for?

“Warrior” sounds like we are fighting.
:bow_and_arrow:
And we certainly are struggling, trying to keep our energy up to do things, we certainly are often courageous
:muscle:
and … we have fibro.
But we sometimes feel we are fighting fibro. This could mean seeing it as an enemy that has robbed us of our true life. It could mean overdoing it like in our old life in spite of the backlash flare we can expect.
I think of FM more as my body teaching me to self-care, telling me what it desperately needs.
I am still a warrior in that I am continuing to live life to the fullest (no longer defined by lots of activity or providing) despite it, not because I am fighting against it.
I am “fighting” for my body, so it doesn’t need to complain as much, i.e. putting as much energy as I can muster in defending it against all triggers. In some cases that may mean I decide that a pain is a mislead/-ing warning sign which I can go up against and reinterpret. In my case/s this hardly ever works or rather - I do this so naturally, having done lots of CBT etc., that no false warning signs come up, leaving me certain that my local pains and overall Ache are both real warning signs, the local pains that physio needs to help, whilst supps and keeping to the sweet spots can contain much of the Ache.
Maybe this can be criticized as naive reframing, but I think it’s the main way, at least for getting as much change as possible, more than letting off steam about how bad we’re feeling, see my bit about self-motivating above.

Of course we aren't born experts for our bodies. But fibro is the best teacher there is.
Calling fibro a teacher may sound overoptimistic, in some situations cynical and unempathetic. I thought of this dilemma when I just heard a Buddhist teacher on a TV programme. Asked about the "meaning" of COVID he said that like any crisis (e.g. climate change if we keep to nature at large) it could be seen as a teacher, like "your biggest enemy, your biggest opponent", and a crisis is just a fork in the path which offers us decisions how to carry on, like we do all day, just much bigger (and thankfully rarer). I think the words 'enemy' or 'opponent' mean "even" our opponents (which may be things like anxiety or addiction, but also persons that make our life tougher), it's not necessarily saying we need to see the crisis or the climate or the virus or fibro as an enemy.
 

sunkacola

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JayCS, I agree with you that you do not need to see Fibro or anything else as an enemy. In fact, as I see it, it is very counter-productive to do so.
FM is IN our bodies, so if we see it as an enemy we are villainizing a part of ourselves. It is not something separate from you. It is very counter-productive to try to "fight" FM. It's not like cancer, or a virus or bacteria or parasite, which is actually not really part of your body and indeed can be fought, and either removed or killed or made to vanish.

If we see this as an enemy to fight we are only fighting with ourselves, and that is not ever going to be helpful. It also means we would be stuck in the state of "This shouldn't be happening to me, I don't want this to be happening", and wasting our energy on that negative approach rather than accepting what is in the moment and making positive moves.

Seeing it as a teacher might be more than some people can do, at least at first. It took me a while to get to that, and I don't think it's necessary to get to that position either. But if one can, then there is much to be learned from listening to your body and understanding it better, and observing your mental reactions and understanding them better as well.
 

JayCS

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@sunkacola - fitting of you to chime in, since you were my main teacher for this, like when we discussed the psychologist from the pain clinic last year offering me the image of fibro pain being like an 'annoying relative on my back' - which I then quickly abandoned even considering, cos your take on it was so immediately convincing to me. Still now wondering how anyone can think that image is helpful... but it takes all sorts or rather... we're all different.

Right, getting deep again here:
Now I'm wondering from what you say how else we can see fibro, seeing as everyone is different and praps needs different ways of coming from fighting it as an "enemy"/"beast" like a "warrior" to reconciling and radically accepting. As I say above "fighting" is a familiar "grieving stage". Of course for some it may be a radical "jump", which suddenly clicks into place, for most probably a psychological development that comes by itself when we've mellowed for it ("fought enough").

💥It's the psychology of dealing with change.​

Looking at two websites about this, it seems to me the first general idea is to delve into the new situation leaving judgement aside increasingly more and the second to become increasingly active.
"How to Transition Through Change" on ccl.org has Tips for Navigating the 3 Stages of Transition, where the 3 Stages are 1) Accept the Ending, 2) Live in the Neutral Zone, 3) Reach your New Beginning.
The passive part is at the beginning: A1. admitting change, B1. realizing that uncertainty is a normal part of it.
Logical because it is action orientated and so relieves our feeling of powerlessness.
A2) seek information, A3) note what's lost, what's gained, B2) Set short-term goals B4) connect to your values, C2)1 Create strategies C3) mark your success.
psycom.net suggests 1) Evaluate Your Level of Control 2) Practice Self-Care 3) Check Your Thought Patterns 4) Be in the Present 5) Find Your Priorities

It helps me to compare new things to old easy guidelines I've internalized well (yup, constructivist I am):
Two 4-step mottos that often help me are and I've mentioned the first above and often:
1. Face - Accept - Float - Let Time Pass (from anxiety-coping management, i.e. me with myself) and
2. "Describe a conflict without judging" - "Describe how you feel in this conflict" - "Describe what you need" - "Express a wish to prevent the conflict from arising again" (from non-violent communication, NVC, i.e. me with someone else)
I think both can help here similarly - with acceptance and the emotional side. But they stay more in the passive situation orientated stance and

💥 change demands activity; if what we experience changes, then our thoughts and actions need to get going to adapt & adjust to the change.

That's what we humans are made for, much more than any other beings....

So back to the original question:
To get from the grieving & fighting stance to acceptance it's good to

follow

💥1. the more "passive", situation oriented, rather mental part of

💥facing,

💥turning off our judgement,

💥describing the new situation,

with

💥2. the more "active" part of working at goals,

💥connecting "us" (our values) with the new situation,

💥creating strategies,

💥marking success.

For both it's good to practice staying in the Here-And-Now INSTEAD OF the idealized, nostalgic past OR our dreams or nightmares of the future, INSTEAD OF comparing with others, counting our wounds all day, the injustice / unfairness etc.
(A study I found the other day showed that it's tougher for us than for people with rheumatoid arthritis, because fibro is more 'mysterious' and we experience it somehow more 'unjust'.)


I was wondering which image could help here apart from it being 💥a teacher, and let's say 💥a part of ourselves, 💥a symbol of the limits of life, or in this case it 💥defines the limits our new life.
But perceiving it as coping with change would mean it's a 💥catalyst of this change and it's maybe more important not to focus on 💥what fibro is, but what we can
💥DO to progress and become happy again (or in my case remain happy) despite all tribulations....
and this re-connects to the "fighting" meme: The "fight" can be seen as a symbolic expression for doing something about it, for the action, in the face of the tribulations, like fighting against headwind.
Am I on the right track? (Whoops, just seen that title of a new thread - coincidence I think...)
 
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DGN

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What makes a good fibro Warrior? What are we Fighting for?

“Warrior” sounds like we are fighting.
:bow_and_arrow:
And we certainly are struggling, trying to keep our energy up to do things, we certainly are often courageous
:muscle:
and … we have fibro.
But we sometimes feel we are fighting fibro. This could mean seeing it as an enemy that has robbed us of our true life. It could mean overdoing it like in our old life in spite of the backlash flare we can expect.
I think of FM more as my body teaching me to self-care, telling me what it desperately needs.
I am still a warrior in that I am continuing to live life to the fullest (no longer defined by lots of activity or providing) despite it, not because I am fighting against it.
I am “fighting” for my body, so it doesn’t need to complain as much, i.e. putting as much energy as I can muster in defending it against all triggers. In some cases that may mean I decide that a pain is a mislead/-ing warning sign which I can go up against and reinterpret. In my case/s this hardly ever works or rather - I do this so naturally, having done lots of CBT etc., that no false warning signs come up, leaving me certain that my local pains and overall Ache are both real warning signs, the local pains that physio needs to help, whilst supps and keeping to the sweet spots can contain much of the Ache.
Maybe this can be criticized as naive reframing, but I think it’s the main way, at least for getting as much change as possible, more than letting off steam about how bad we’re feeling, see my bit about self-motivating above.


Calling fibro a teacher may sound overoptimistic, in some situations cynical and unempathetic. I thought of this dilemma when I just heard a Buddhist teacher on a TV programme. Asked about the "meaning" of COVID he said that like any crisis (e.g. climate change if we keep to nature at large) it could be seen as a teacher, like "your biggest enemy, your biggest opponent", and a crisis is just a fork in the path which offers us decisions how to carry on, like we do all day, just much bigger (and thankfully rarer). I think the words 'enemy' or 'opponent' mean "even" our opponents (which may be things like anxiety or addiction, but also persons that make our life tougher), it's not necessarily saying we need to see the crisis or the climate or the virus or fibro as an enemy.
I am experiencing this as well at the moment. You wrote: "I think of FM more as my body teaching me to self-care, telling me what it desperately needs." At least in part, and 'at the moment' (because it's always changing) my body is crying out for: sleep, a daily restful state, gentle movement, large heeps of self compassion, good nutrition & supplements, some meds (no opioids), and treatments such as lidocaine infusions to help nudge my HPA axis into better harmony. I don't think it's naïve to think of Fibro as a teacher. It's not that I necessarily "like" the current teacher, only that I am being called to help myself and live differently from before. My sense is that if Fibro didn't stop me in my tracks, and I had kept living a "full throttle" existence, I would have developed something much worse. I sincerely believe framing my condition as a 'wake-up call' helps me transition into accepting and thriving within different (and ever changing) boundaries.
 

JayCS

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It's not that I necessarily "like" the current teacher .... My sense is that if Fibro didn't stop me in my tracks, and I had kept living a "full throttle" existence, I would have developed something much worse. I sincerely believe framing my condition as a 'wake-up call'...
Brilliant images and thoughts, thanks @DGN!
 

JayCS

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Fibromyalgia and similar illnesses can let us "Be a Champion" in "The Hall of Fame" - see the inspiring mainstream pop rock song from 2012 by The Script from Ireland (which I was often requested to sing and play with others in small informal contexts 3 or 4 years ago).
One of the musical ideas comes from the intro of Lee Ann Womack - I Hope You Dance, 2000, with arguably deeper lyrics, but a sadder (Country pop) touch (covered by Glady Knight 2013).
 
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Badger

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There's a lot on this thread to reflect on, it can often feel like we are a placeholder for where suffering exists. We might feel obligated for others but our health and wellbeing comes first. It's exhausting, they don't realise how much, but we mustn't push too hard, those we care for need to allow for us too. I'm possibly going to a friend's and staying over for new years but I'm more concerned with what to sit on as my hamstrings are so chronically painful and their couch is so low..
 
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