So many brilliant ideas! In some cases I'd like to add a little. In others I'd like to not correct, but show different opinions (often about what fibro is), based on research of the research for 1000s of hours.
I knew something was not right but my doctor at the time made me feel like it was all in my head. Has anyone else had a similar experience? Because of this, I still find it hard to advocate for myself during doctor appointments.
There are at least 3 types of fibro being "all in our heads". When we don't know these, we may sometimes mishear docs. Sorry this answer bit got a bit long, but it's 3 big topics in one I spose.
1) The one you mean is we are imagining things, are hypochondriac etc. Since researchers have to this day a tough time finding any abnormalities in our bodies, that used to be the first thing docs thought of, and unfortunately that hasn't necessarily changed. Possibly also because they misread the research, which has grown a lot more careful, at least the way they put in the studies directly. Didn't keep from some quite good researchers 2021 pre-maturely claiming fibro "is autoimmune" in press releases.
2) The second is the one johnsalmon is referring: the theory (hypothesis actually) that fibro is a CSS, a central sensitization syndrome. This is based on the fact that they can find no tissue injury, nor any nerve injury, which could explain it. They've even invented a 3rd pain type, "nociplastic" pain, for us. My first contention is that the arguments they base this on hardly ever fit to my symptoms. Central for instance is hyperalgesia (we feel pain stronger) and allodynia (even touch hurts). Not only does this not fit to my form of fibromyalgia, but when I do have it there is a reason. E.g. I had allodynia now because my wife had CoV. We distanced, so my viral low was too low to test positive. But I've had several bursts of strong new symptoms parallel to hers. So does allodynia now mean I have nothing? No, it means researchers can't find anything
yet. And I argue the same for this total concept: Just because medicine can't find anything yet, does no way mean there is nothing to find. It may be on the level of mitochondria or the gut biome, both way beyond understanding of research as yet. (When I was at school researchers said light is a particle and a wave at the same time. I didn't believe them. Now they no light is photons which have traits of both. Now we're talking.)
3) The third is the psychological, mental level. I can see you know what I mean, cos you do mindfulness etc. This is the level where people like to say: I'm not mentally sick, I am like I am and can't change, and I don't know how talking to a stranger about something they don't understand is going to help. I and some others here say that the point is that "radical acceptance", and I recommend ACT, can let us be happier despite the symptoms. This is something we can learn from "strangers" that don't need to "understand" fibro. And it doesn't mean we're mentally sick, it means we want to find ways to become happier despite our conditions. And it doesn't mean we change our personality completely, it means we come
closer to who we actually are by changing our attitudes.
I work hard to eat clean and healthy (nitpicking any food I eat that has a label but most of my foods don’t have one)
Yeah, eating / tolerating only unprocessed foods makes reading labels unnecessary...
doing some type of movement or exercise each day (even the days when I’m reduced to tears from the pain)
On those days I also do lots of exercises, but none that increase pain, mainly slow stretches..
staying on a sleep schedule as best as I can (in spite of my insomnia) and napping when I need to
Good to find our own one, but check with others, I have variety of supps and like Huberman and Selsick best - e.g. catching early daylight to improve the circadian rhythm.
and doing daily meditation and gratitude practices.
Brilliant. - If I try to "sit" (still?! 😬 ) and concentrate on one thing, it drives me mad and increases discomfort and pain, but I practice mindfulness and collect "reasons to be cheerful" all day all the time.
Then about a week ago I was diagnosed with an autoimmune disorder....
Has anyone else dealt with a second chronic degenerative diagnosis on top of fibromyalgia? And if so, how did that impact your symptoms and overall health?
All my other conditions add symptoms, make things like eating extremely complicated (amount and the way I eat too) and brings my amount of supps up to 50/d. But having weird problems early on in life I was pretty sure that docs and meds were wrong, and they were. I knew my body, knew 'medicine', knew how our health system and people work, so got my fibro diagnosis inside of "3" months, then learnt to use the web for it, and we knew the jabs would throw me down, but using the web I only needed 2 months to find MCAS as diagnosis and get it confirmed. On a mental level I knew exactly what might be coming up and how to adjust and increase my quality of life.
So -
sort of - the more diseases I have, the quicker I learn, the higher my happiness and quality of life.😼
I’m lucky enough to have an amazing family as my support system but I do feel like a burden to them with all the help I need. Often times I just don’t ask for the help because I feel so guilty and then things usually go awry. Does anyone else feel like a burden to family and friends? How do you cope with that?
The key here is these feelings make our condition worse, the relationships to them worse, and increases the burden I place on them. I don't need much help actually, because others make things worse. I can get up better alone than others getting me up. I prefer buying things myself, cos my wife brings me things that aren't good for me. But I know my wife needs to help me somehow, so I choose things that I really do need, or don't harm too much. I also know everyone arounds me needs to know what exactly my problem is. It often isn't my pain, altho it may appear to be. Opening up helps them.
Yes, we get flares when things feel worse, but they really aren't.
I know what you mean. But all my flares are caused by some kind of overtaxing of my body and/or not having found the right treatment yet. Once I rest, pace and find something, it gets better. All my symptoms have a specific cause, each Ache, each pain, each other symptom. I find most, so I know.
If I'd push thru, everything would worsen, every single one of my basic body functions would get measurably and visibly and audibly considerably worse.
But what you're saying in a short way is praps that there are situations where we can push thru? - Which I'd fully agree with.
I do honestly feel like a burden to him all the time, even tho he tells me I am not.
Yeah, we are burdens. I'm a hell of a burden for my wife. She'd want to do tons of things with me, visits, trips, holidays, and I can hardly do anything, 20 minutes in a car and I'm done. But I do not burden her with unhappiness, because I make sure I self-care, I make sure I am 100% happy, I make sure life could be fun with me in a different way. If she takes that she could be the happiest woman on earth. If she doesn't she isn't. But it's her self-responsibility, her self-care. She does hardly anything for my health. I wish she'd listen to my health talk more than a few minutes a day, but she can't so I have to get on others' nerves with it all. Technically that way altho she's physically healthy she's much more a burden for me than I am for her (and in lucid moments she knows that and I tell her she's not, because....). .... that's the sort of thing I sort out with in talk therapy - learn techniques to deflect her problems / "arrows" in a loving, empathizing, but firm way.
So feeling we or someone else is a burden is something we can work on, and remove completely, nothing we have to leave in our life.
Just like we have to learn to forgive ourselves for not being able to do everything, everyday.
Yep!
reminding me to look for the little things
Yep!
It getting worse now doesn't mean it will continue to get worse.
Yep. There are many reasons why fibro symptoms can get worse. Almost as many why they can get better.
Make sure you have good information on this, and don't rely on "doctor" googlefor information.
Web info has saved my life, real doctors have mainly harmed me. I can't actually think of any time where any website, even the worst, has harmed me or really misinformed me.
But maybe that's because I know that there are many opinions and I always look deeper, make sure I test suggestions carefully, and I know "my people".
The worst misinformation I think has been on all fibro forums I'm on by people touting miracle cures or certain products. As I've seen quite a bit - but not all - and know how to research products, studies etc. very well, I'm quick to take these types of posts apart and support
@sunkacola in the important role of a moderator in these cases. There are of course sometimes "miracle cure" and "product" websites which sometimes turn up first in searches, because they've been engineered that way, so it's important either to educate, compare and think for ourselves, or turn to forums like this to get it checked. Things can be said here, but they never remain unchallenged.
if you stay very current with your family, letting them express their feelings and thoughts, and giving yourself the opportunity to express y ours, it can make all the difference. If possible, make it a regular thing. say, after lunch on Sundays or whatever time is good, all of y ou sit down and have an open discussion where concerns can be raised and talked over.
Brilliant idea!
It’s been a blessing having specialists that all work together and actually listen to me rather than discounting me.
Wow - I can only draw close by saying all my docs were nice and well-meaning, and listen, try to help, and I have a certain set who support my ideas, give me all bloods I need etc.
frustration creep in but I know that emotion doesn’t serve me in any way so I’ve been trying my best to stay peaceful and loose, as I like to say these days. Keeping these achy joints and muscles moving 😂
Ha! You German? "Stay loose" is a very typical phrase here, but I've never heard in in an English context? I love the way you're giving it the holistic touch of thoughts, emotions, body etc.
So excellent, mindfulness / as deep relaxation as possible, letting go, letting loose is one of the things with which I can decrease and usually stop any jaw pain inside of seconds, despite it being from inflammation and other issues, not TMJ.
so perhaps the feeling of being a burden lies solely within me.
😸 👐
I live alone, well I have a cat but she’s not much of a conversationalist.
I would need more to have some one to get on the nerves of (someone translate please
).
But I so often nowadays need my own peace and quiet, conversation is so much of a strain.
its important to understand that the pain you feel in the muscle is not from damage to the muscle it is due to a problem in the pain central area of the brain.
none of those actually damage the muscle and in a "normal" person there would be no pain signal
That's one hypothesis, a bit more accepted than others, but not well reasoned, not well proven.
In my fibro the pain I feel in the muscle is a damage in the muscle. When my wife sees my face turning what she calls green-white or green-yellow because I'm doing too much, without me even realizing, there is absolutely no doubt for her that I am considerably damaging my body.
Praps similar to someone with severe flu continuing as if they didn't. We have hyperalgesia and allodynia when we have the flu, just that there they can measure the inflammation, cos it's temporary. Ours is chronic and is at a much deeper and more complicated level.
There may be more moderate forms of fibro or forms of hyperalgesia where this isn't true,
so I'm not saying this is wrong, I'm saying it's not the case for me, so it'll vary, and also from what I read from everybody I can't really see this to be true. I think it's an idea of doctors, that may be a part of the story, in my experience a small part.
being fibromyalgia your muscle can just suddenly pain and just as suddenly stop
I agree, sometimes yes. But most of the time, there is an underlying body problem which I can find out even when the immediate pain seems gone, like by finding trigger points, and make sure the sudden pain doesn't start up again, sometimes: ever.
fibromyalgia is a GOOD reason to go to a pain clinic to learn how to manage the pain
Very true, if it is the type of pain clinic that does this well, e.g. does ACT, not pill mills, like sunkacola has specified.
hopefully in due time they will fully understand the mechanics of fibromyalgia and there will be a simple little pill that overcomes the incorrect brain function.
My guess is still: 20-30 years, and only possibly by using artificial intelligence. I don't think it'll be one pill, I think praps a combination different for each of our types. And as said I don't think it's the brain function it'll overcome, I think it'll have to combine on various body levels, on cellular level, nerves and hormones - and in that sense also including the "brain function".
Instead my question came out as something quite different
No worry, easy to correct, but best for us to do so immediately, for all.
And if anyone can let me know how to edit at some point, maybe I’ll do that 😂
After you post you'll find "Edit" bottom left under the post for a while. The more you post the longer you'll be allowed to edit, at the beginning it may be only a few minutes, I can edit for many hours after, praps half a day. But sometimes edits may be confusing, like in this case after a correction, so it's best to take care how exactly we do that. If I write soon, I correct, if it's a while later, praps someone has read it or is already answering with a "wrong" quote, so I then specify
"Edit:" or warn in another post, which I then may or may not delete.
Also you may have noticed that you used the name of the most popular search engine above and it will have put your post into a moderator queue first. It's best to screw certain words like go.o.gle or L. DN up to get it thru. This is for our protection because people touting things often use these words. Sometimes getting put into a queue is just a bug tho....
