Undiagnosed but thinking I belong here

[JayCS]

deep tissue massage... was amazed at how much of my tension was relieved by this.

I can well imagine! -
I only did it twice in the fibro clinic, but despite my fears that the big lady was scrunching me and my very sensitive skin to pieces, my skin took it well and it was a great relief after.
Reason I didn't do it again was cos I was doing other manual therapy until the 3rd jab made me stop and prefer self-treatment instead.
As you've whet my appetite I've had a quick look on the web, but can't find someone in town anyway who does exactly this. But what comes up is using a massager....
This I usually use for painful spots (mainly tendon insertion points around joints), it's not on my radar for 'just' overstraining (my wife tends to remind me tho). But I need something, cos with my new energy from L D N I've been managing many hours of garden work the past few days and hardly lying down that my back muscles are a bit overstrained. Can't be bothered to lie down and am intrigued if my massager can help, so got it out, going by where it seems to be strained most, so lower back, already feels better, then right shoulder (praps increased from holding it), then lowest back. Not much more than 5' and already good relief.
Right wrist was slightly strained again from holding it, but 1' pressing was enough.

Then (whilst talking to my wife) I did some hanging and whole body twist-stretching (e.g. feet heels to toe, back arched, arms backwards, then one foot twist-stretched behind the other), then combined hanging with that.
And whilst at it my vertigo exercises and a "full" workout (15'' horste stance).

So thanks, you really got me going with that reminder!

 

[JCEBV]

Well it seems the reprieve was indeed short lived. After a particularly stressful work Monday, I am noticing drastic uptick in symtpoms, here comes the muscle pain in the legs and calves. Here comes the stiffness in my arms and hamstrings. Here comes the worry that this isn't normal. here comes the jelly legs. here comes the focus on all of the symptoms which is almost certainly magnifying them. Uggh.

 

[JayCS]

Well it seems the reprieve was indeed short lived.

Maybe time for reframing!?
And looking at your thoughts and feelings as not more than that...
Drastick uptick means you had a drastick downtick.
The pain and stiffness comes means you had a lot less, and also know what from.
Brilliant that you are noticing the difference and can identify the trigger: many can't.
Great that it needed particularly stressful work to trigger the symptoms you had before, and not just a normal work day - that makes a lot of difference.
Great that the deep tissue massage had such a good effect.
What else praps contributed to that good effect?

So now important to have a look at what exactly triggered the stress and what you can do about it. Short term if you need a day off to recover, gather strengths & wits. Short and mid term to question the way you work.
And to use the next reprieve, praps that day or so off, or next weekend, to make decisions, install new ways of thinking, feeling, working, exercising, appointments....

When fibro hit me fully (with the continual full flare I'd still be in if I didn't apply >100 treatments a day) I could see something was coming up, wrapped the most important things up at work, then had to stop and concentrate on getting well again, my health was then my full time job, docs, researching - that took 10 months (mainly due to harmful exams and treatments), slowly starting again I could only get up to 30% and many things needed to be changed at work until the jabs threw me out for good, except a bit of online stuff. Others thankfully don't get such a blast and have the capacity to re-adjust.

 

[JCEBV]

Maybe time for reframing!?
And looking at your thoughts and feelings as not more than that...
Drastick uptick means you had a drastick downtick.
The pain and stiffness comes means you had a lot less, and also know what from.
Brilliant that you are noticing the difference and can identify the trigger: many can't.
Great that it needed particularly stressful work to trigger the symptoms you had before, and not just a normal work day - that makes a lot of difference.
Great that the deep tissue massage had such a good effect.
What else praps contributed to that good effect?

So now important to have a look at what exactly triggered the stress and what you can do about it. Short term if you need a day off to recover, gather strengths & wits. Short and mid term to question the way you work.
And to use the next reprieve, praps that day or so off, or next weekend, to make decisions, install new ways of thinking, feeling, working, exercising, appointments....

When fibro hit me fully (with the continual full flare I'd still be in if I didn't apply >100 treatments a day) I could see something was coming up, wrapped the most important things up at work, then had to stop and concentrate on getting well again, my health was then my full time job, docs, researching - that took 10 months (mainly due to harmful exams and treatments), slowly starting again I could only get up to 30% and many things needed to be changed at work until the jabs threw me out for good, except a bit of online stuff. Others thankfully don't get such a blast and have the capacity to re-adjust.

Thanks again for the kind words. I guess I'm still stuck in this "worrying" game of what is causing these severe symptoms??? I had mentioned having a good medical workup but what is enough? Possibly never enough for me? I started off Monday doing well by the end of the day I was a mess with Jelly legs and soreness and cramping sensations. I "know" I am overanalyzing my symptoms which is not helpful but I can't imagine I am causing them. I know the mind body connection is powerful but this seems so extreme. I also do need to address my career situation which is not helping matters at all.

 

[JayCS]

I guess I'm still stuck in this "worrying" game of what is causing these severe symptoms???

To get out of worrying about worrying and praps reducing the worrying quite a bit, I'm wondering if it's possible and helpful for you to upgrade the worrying by calling it "legitimate interest"? Which from what you say you also have, by having properly researched things. Also seeing that glass as half full too: My wife always said I didn't worry enough, and is now oversatisfied by me going to docs, but also researching everything, because we know docs are just as dangerous as helpful for me. So it is good, if you can, to carry on getting the worrying motivate you to get explanations.
But also, what I'm again missing here is to get the worrying to motivate you to work on the symptoms even without an explanation...?

I had mentioned having a good medical workup but what is enough? Possibly never enough for me?

Similar: That's not necessarily overworrying, again at least a good portion of it is "legitimate interest". At this stage your workup isn't enough. And when main things have been checked, you might want to find further clues by getting further single symptoms checked (I did). And you might want to get 2nd and 3rd opinions (I did). That's when it may get a money problem or you realize no doc can help you further or that their exams are actually harming you, you need manual therapists and psychotherapists (incl. again switching several times) to help decrease anything that is possible (I did), and then you may come to the stage that these have helped quite a bit, but also don't help any more, or harm (I did). And still it's not enough and new things'll come up, but a desire to get peace of mind might grow despite all the symptoms - preferably now, rather than later, so "radical acceptance" of everything that you have no capacity to solve would be necessary....

I started off Monday doing well by the end of the day I was a mess with Jelly legs and soreness and cramping sensations.

Brilliant that you started doing well! The end of the day is not that relevant, what is relevant is the point in time when things went wrong and how it happened. You're your own sleuth here, you won't get help from docs for that, at most from very good psychotherapists, and you don't need help either.
An example, I hope you can apply it some way:
In my anxious days it was a big turning point to me when I let a stressful workday pass thru my mind and realized that it was actually only a 3 minute interaction that in my mind ruined everything and caused massive phobic pain, very similar to now my fibro Ache. From then on, I always looked for these terrible minutes, tried to see all the good things that happened before, what went well. Then analyzed the terrible minutes and put them in their place - in that case it was a silly, insolent person who shamed me to try to get something from me. Then made sure I didn't distract, but got this very clear in my head, relaxed and rested on my oars for having had a good day before that and for enduring that idiot, making sure it doesn't carry on eternally.

I "know" I am overanalyzing my symptoms which is not helpful but I can't imagine I am causing them. I know the mind body connection is powerful but this seems so extreme.

So maybe you're not overanalyzing - or pretending that you're not can reduce it.
But absolutely NO WAY is your analyzing a cause of the pain.
What worrying does is increase the pain, hinders us from getting help or getting out, by laming us, making us waste time ruminating, prolonging it. What it also does is make a problem out of it. It puts a capital P in pain, puts the suffering into it. Pain is pain, and that doesn't have to be a problem. You know what I mean? Of course it's not nice. But it's controllable. Once we start making more of it than it is, it takes control of us, instead of being a warning sign that we need to self-care better.
You say overanalyzing.... Does that word fit? From what you've said you do seem to have been searching. What about plain analysis, like thinking about the trigger of the stress and pain on Monday? Or I don't know if you mean alternative words like (over-)dramatizing or catastrophising - studies (esp. on FM) have shown that women tend to this more than men, but recently I read the opposite in a study.
I know my wife dramatizes and catastrophises and I definitely don't, I play this all like a peaceful game of rummy - if the rules change, I learn that quick, I may lose a lot of the time, but sometimes I win, it doesn't really matter, as long as I'm in the game, that's what counts.

also do need to address my career situation which is not helping matters at all.

Ah, you can pat yourself on the back (I'll do it for you, for starters) for acknowledging this - that's enough for the moment, we can't re-start our life in a flash. There are many things not helping - one thing leads to another. Some obvious, some hidden. Some we should have taken care of before or once the pain started, but shoulda, coulda, woulda... Now we can take stock, by identifying and prioritizing the triggers of our symptoms and tackle them bit by bit. It sounds as if you can roughly describe your symptoms pretty well, but real analysis would mean continually working on it by comparing with others and watching them and even delighting in being able to detect details.
It was a very helpful and satisfying revelation for me to realize by feeling/sensing that my joint problems are 'just' the tendon insertion points, to pinpoint differences between pain types and their triggers (like local vs. overall), that I can distinguish and use my energy profile. Before that also to overcome my worries, and now to have applied techniques to be happier than ever etc....
If anyone overanalyzes I analyze my symptoms and triggers/treatments more than most - cos I don't think analyzing can be overdone anyway, unless it becomes an end in itself, with no further purpose. Doctors who don't know me tell me that focusing on them may harm, I quickly prove them wrong. But that's because I use that analysis for improvement, however slight - an arrow, rather than riding on a merry-go-round seeing what I might change, but not changing anything.

 

[JCEBV]

Jay you are a sage and a saint! Will review all recommendations

 

[Ntina]

Please check DNRS , it works.

 

[JayCS]

Please check DNRS , it works.

Thanks for the pointer - but how exactly does it work for you?

Definitely interesting to have a look at, but very carefully, cos programs can stress us... And there's no hard evidence for these programs.

This is Annie Hopper's version of training "neuroplasticity" (that's the "N"). On my list the other day it was Ashok Gupta's "Gupta Program" for the "amygdala" that someone recommended, similar.

DNRS consists of CBT, mindfulness, NLP and stress management, so it's a purely mental program, focusing on the mind-body connection. So its danger is to minimize the actual physical condition.

CBT alone does have some more evidence than most treatments for fibro and for ME/CFS, but of course it doesn't help everyone.
The ME-pedia criticizes DNRS pretty strongly, saying it has no good evidence for ME/CFS. And that the dedication and attention it needs to make it work can and has harmed some with ME/CFS, by leading to PEM / fatigue.

I personally do all this brain stuff anyway, but self-controlled, talk therapy whenever I need it, to get any worries under control. I can well imagine how a program can cause stress. I've experienced it myself in the ACT online course - however the benefits overweighed. Of course it's "hard work" to change our attitude and life, doesn't come easy, but I've always found it rewarding.

Careful: neuroplasticity here designates the flexibility of "brain wiring", so these programs attempt to make it more flexible. It's true that the brain is flexible, but it's very unclear if a program that tries to re-wird works and applies to our conditions.

The new definition of invisible chronic pain including our fibro pain is "neuroplastic pain", similarly meaning that the wiring in the brain has gone wrong. Again here there's a fine line where saying there is no injury can sound as if it is all in the mind, whilst here it is saying it's physically in the mind, not mentally, and above programs are saying part of the suffering is influenceable, dangerous and unfair if they claim it's curable.

 

[SacrificedPawn]

Hi, if b12 is low you may try to take b12 tablets?


Even though my b12 is higher than the limit that machine is able to measure something bigger than 2000, with approval of my very reputable doctor, i do use b12 tablets like every 2-3 days and it helps a lot!