What do you think Fibromyalgia is?

[Momzilla]

I promise I'm not going to get post crazy. I'm still trying to figure out this site. Sorry I'm probably doing it wrong.
I would love to hear anyone's thoughts on what they think Fibromyalgia is.
I was told a few years ago that's what I had and I ignored the diagnosis. Only because to me it seems like the diagnosis they give you when they can't find anything else. Please don't get me wrong I believe its real and our symptoms are real. But obviously we don't know what causes it etc. I read one time a high number of people diagnosed have had a surgery. That got me really thinking. There's so much we don't know and understand about the human body or brain. Did the wrong wire get tripped when they were digging around in me .I want to say my symptoms started or got worse after my lung surgery. My symptoms have tripled since my last c-section. I dream that I'll get to know by the end of my lifetime.
Is is maybe fast food/fast paced lifestyle? Maybe coupled with genetics and then being a Cactus in the wrong climate?
Its got to have something to do with modern day life style right? No one had fibromyalgia on Dr.Quinn medicine woman...
Id love your theories! Also whats everyone's thoughts on lymes?

 

[Jemima]

Post as much as you want - you're doing everything right!

OK, everything I'm writing here is from various Googling, and an article published on Verywell Health earlier this month that summarised recent fibro research. Prepare for information overload!

In the old days, in the UK at least, all kinds of chronic pain conditions were just described as "rheumatism", no matter the cause. That said, apparently fibromyalgia tender points were first discovered in 1820, and described as "fibrositis" because doctors mistakenly believed that it involved local inflammation. In 1976, it was renamed as "fibromyalgia" as it became better understood.

Its onset has been tied to lots of different kinds of trauma, including surgery, pregnancy, emotional trauma, viral infection, car accidents, war-related trauma - all sorts. But the mechanisms of such triggers aren't understood, and some doctors speculate that we might be born predisposed to it, waiting for a life event that will bring symptoms to the surface - although others disagree! My initial trigger, as far as I can tell, was a very bad relationship that put me in high stress for several years, but then each time I went through another trauma - horse riding accident, car crash, house fire - it seemed to step up a level until it had fully manifested. This is something that we've discussed here in the forum quite a bit in the past, and almost everyone had a trauma story of some kind. The search function is great if you want to dig into previous topics!

There have been quite some developments in understanding fibromyalgia recently. Earlier this year, a study seemed to demonstrate that the condition is autoimmune - something that previous research had contradicted. They also identified neuroinflammation in sufferers - inflammation within the brain and spinal cord - and small-fibre neuropathy, which means minute damage to the body's nerves, causing weakness and pain.

Recent studies have also identified a variety of types of autoantibody in some (but not all) fibro patients, which each attack certain things within our bodies. Specifically, in order of frequency found, they discovered autoantibodies that attack serotonin (the happy hormone, associated with depression); gangliosides, which are molecules in the brain; phospholipids, which are regulative barriers within our cells; certain muscle fibres; moisture producing glands (explaining why some with fibro experience dry mouth/eye issues); and in fact the thyroid gland - fascinatingly with the same autoantibodies as seen in Hashimoto's Thyroditis.

The neuroinflammation that they found involved microglia (cells in brain and spinal cord involved in immunity), astrocytes (information processing), oligodendrocytes (protective sheath around nerves), and BDNF (molecule involved in memory and learning). They also found an impact on mast cells, chemokines, cytokines, interleukins, TNFa, macrophages, and T-cells, which all play a role in our immune system.

Finally, they found dysregulation in systems responsible for processing touch, skilled movement, cognitive function, attention span, spacial perception, memory, and learning; and atypical function in the medulla (communication with heart and lungs), amygdala (stress and fear response), and left superior temporal gyrus (language processing and remembering what you've just heard). Interestingly, they found that the distribution of these impacts predicted symptom distribution: for example, more pain, more fatigue, more depression, more aggression, etc.

I know that's a ton of information, but because it all sounds so familiar to me, I found it strangely comforting! I'm choosing to look at it from a perspective of understanding that it's not my fault these things are impacting my life - there's an explanation, so I can just focus on navigating dealing with it, and self-managing to minimise my symptoms. Of course, when you've got other symptoms at play - as you do - all of this just adds to the puzzle, but I hope some of it might be helpful!

RE lyme disease, I've heard of people having dual diagnosis as well as the idea that lyme can trigger fibro - however it's important to recognise that advanced lyme disease is a progressive condition that can become very serious and needs treatment. In contrast, while fibro is a complex multi-system condition that ebbs and flows in terms of severity, once fully manifested it is not considered progressive.

Phew!

 

[Auriel]

That’s some interesting stuff
Didn’t know you’d been in a house fire jem’s That’s scary

 

[sunkacola]

Thanks for that info, Jemima. Very interesting and I have not done the research to find all that myself.
You and I have very bad relationship, car crash, and house fire in common. No doubt other various traumatic things as well. I have always thought that those things and others added to the factors bringing me to having FM.

I feel in my gut, which may be of course completely wrong, that there's really no such thing as Fibromyalgia as one thing. It's instead an umbrella term (like saying "rheumatism" in the past) that they are currently applying to people with certain kinds of symptoms they cannot separate out and fully diagnose into separate syndromes or diseases. I think in the future what is now called FM will be called several different things, just as "rheumatism" has been broken up into different things.

 

[Jemima]

That’s some interesting stuff
Didn’t know you’d been in a house fire jem’s That’s scary

I'm mortified to say we've come through two! Very scary indeed. We had a chimney fire and lost most of our roof at one point - great story because I was in the bath and was fighting the fire in the buff with a garden hose. Managed to put something on before the fire service turned up, but slightly traumatised my step daughter Old houses in drought countries - I now know better that you can't be too careful.

But the worst was the huge Portugal forest fires in 2017 - around 1500 houses burned in one night in this area, and countless farms and businesses - very like the fires you see on the news in the US, but for some reason the UK news didn't seem to feel it was worth reporting Our house went completely - had to demolish and start again. Lost some animals too, which was very sad, but managed to save my dogs and my house cat. We're all good now!

 

[Jemima]

Thanks for that info, Jemima. Very interesting and I have not done the research to find all that myself.
You and I have very bad relationship, car crash, and house fire in common. No doubt other various traumatic things as well. I have always thought that those things and others added to the factors bringing me to having FM.

I feel in my gut, which may be of course completely wrong, that there's really no such thing as Fibromyalgia as one thing. It's instead an umbrella term (like saying "rheumatism" in the past) that they are currently applying to people with certain kinds of symptoms they cannot separate out and fully diagnose into separate syndromes or diseases. I think in the future what is now called FM will be called several different things, just as "rheumatism" has been broken up into different things.

Isn't that interesting that our experiences are so parallel - I remember us going into more depth in another thread once before. It does make sense to me that going through all of these kinds of things might make the body's systems break down in one way or another - sometimes, it almost feels as if it would be extraordinary if they didn't!

One of the things I thought was interesting about those studies - that fits very well with your theory - is that the autoantibodies, inflammation, and dysregulation vary so much. There are lots of overlaps between those diagnosed, but a broad spectrum of presentations. It's no wonder it's taking them such a long time to figure it all out

But, I think it's exciting that so much research is moving forwards. Even if it doesn't mean a cure or cures, it might mean new treatment ideas, or simply being able to better understand what we're dealing with.

 

[Momzilla]

Thanks everyone for sharing! I have been through my share of trauma. No house fires though. I can't imagine how scary. I agree Jemima about new research/ studies. I went a good year or so not looking into fibro, and then did a few months ago and saw changes in the information.
So aggression or agitation is a symptom of fibro?
Also I found a wide range of symptoms on line including skin rashes with fibro. Which of my symptoms don't mesh? The hair loss I didn't associate with fibro.
I've gotten mixed information on testing for autoimmune diseases. I knew someone very sick that tested negative for lymes multiple times but they eventually ended up finding she had lymes. A doctor (prenatal cardiologist at John hopkins) told me that testing for autoimmune diseases is full proof (like lupus) and that you can't get a false negative.
I didn't know you could search stuff on here.
I'm not tech savvy,mostly because it doesn't interest me. When I can get focused I can figure stuff out usually but just don't like it. I hate even texting. I dont even have any single form of social media. Unless this counts. Plus I've only used my phone this entire time I've been on this forum.
And 1820? Thats well before when Dr.Quinn took place. Lol They should've done a fibro episode.
Hope that isn't offensive. I try to be light hearted where I can. What else is there? Like Jemima going bald! What an amazing friend you must be! ❤

 

[Jemima]

So aggression or agitation is a symptom of fibro?

Yes, it can be for some!

Rashes do indeed come up with fibro. I have to apologise for an oversight - hair loss isn't something I'd ever heard of with fibro, but I just Googled it, and apparently it can happen - I had no idea! The other thing that you mentioned that makes me wonder if something else might be going on is the extent of swollen lymph nodes that you've experienced - for example, in your legs (popliteal lymph nodes - if I'm right in guessing that's what those were! Did you ever talk to a doctor about it?) which strikes me as unusual. But, swollen lymph nodes is indeed yet another possible fibro symptom, so perhaps - failing testing throwing up any other clues - going at fibromyalgia management with everything you can is your best bet? Even if your body is fighting some kind of viral load, giving it every support you can to get back on its feet has to be helpful.

Am I right in understanding that your doc ruled out lupus and is now looking at your thyroid? I've also always gathered that lyme disease is quite tricky to test for - is it something that you feel you could have been exposed to?

I applaud your social media avoidance - I wish I could do that sometimes, but I use them for work!

Loved the Dr. Quinn references That took me back!!

 

[Momzilla]

Oh no, I didn't think you had an over sight at all. I never thought hair loss was fibro related. I also did not necessarily think these lumps were fibro related either. So I just looked to see where lymph nodes are located in your leg and it looks like behind the knee. Which I do pretty much always have multiple lumps on both sides behind the knee. When I look online bakers cyst was the closest thing I found comparable but still seemed off. Last October I told the lady I saw about the lumps and kept pointing to them and she never felt them which seemed odd. Equally odd was that I kind of wanted her to. At least thought it would be necessary. But the problem with bakers cyst or lymphnodes is I get these lumps other places. I had one in my wrist, well like the side of my wrist. Lower shins, and the worst ones which I have a few new ones this weekend and had a handful of new ones a few weeks ago when I was sick (sinus infection) are in my thigh. They are so sore. So two right now really bothering me both about 6 inches above my knee one top of thigh and other on the side. I read about lymphomas which seemed close except it said they are painless.
They thought I had lupus 4 years ago when pregnant because my daughter was diagnosed with heart block and the cause is typically the mother having lupus. This was one of the worst trauma I've had. I was told she may not make it through the pregnancy, and if she did she would need a pace maker when she was born. Hence the prenatal cardiologist at John hopkins.
Whatever was wrong with her heart literally went away. This is obviously a whole unrelated fibro thing. But didn't want to leave anyone hanging. 4 specialists heard and watched her heart block. Heart block doesn't go away. So I'd say she was misdiagnosed except multiple people witnessed this. After she wS born the last cardiologist I saw said she was a miracle. Oh and my lupus was negative.
5-6 years ago I had normal tsh looked at was normal. Last year is when I told another lady I wanted the t4 etc looked at. Came back in normal range but she said I could have ultrasound of thyroid since there little lump in left side of neck. Not lymphnodes its been there a few years. Tiny. Never painful. Who knows.
As for lymes, this is the least inconceivable diagnosis. I pulled a dear tick off this summer that had been attached for 24-48 hours. I have multiple times. Multiple people in my neighborhood have gotten lymes. Every time I turn around someone has it here.
Is it not much of a problem in Portugal?
Wow, i feel like we'd be friends if we met.
I meant to say I had dreds with the back half shaved when I was a teenager.

 

[Jemima]

Oh no, I didn't think you had an over sight at all. I never thought hair loss was fibro related. I also did not necessarily think these lumps were fibro related either. So I just looked to see where lymph nodes are located in your leg and it looks like behind the knee. Which I do pretty much always have multiple lumps on both sides behind the knee. When I look online bakers cyst was the closest thing I found comparable but still seemed off. Last October I told the lady I saw about the lumps and kept pointing to them and she never felt them which seemed odd. Equally odd was that I kind of wanted her to. At least thought it would be necessary. But the problem with bakers cyst or lymphnodes is I get these lumps other places. I had one in my wrist, well like the side of my wrist. Lower shins, and the worst ones which I have a few new ones this weekend and had a handful of new ones a few weeks ago when I was sick (sinus infection) are in my thigh. They are so sore. So two right now really bothering me both about 6 inches above my knee one top of thigh and other on the side. I read about lymphomas which seemed close except it said they are painless.
They thought I had lupus 4 years ago when pregnant because my daughter was diagnosed with heart block and the cause is typically the mother having lupus. This was one of the worst trauma I've had. I was told she may not make it through the pregnancy, and if she did she would need a pace maker when she was born. Hence the prenatal cardiologist at John hopkins.
Whatever was wrong with her heart literally went away. This is obviously a whole unrelated fibro thing. But didn't want to leave anyone hanging. 4 specialists heard and watched her heart block. Heart block doesn't go away. So I'd say she was misdiagnosed except multiple people witnessed this. After she wS born the last cardiologist I saw said she was a miracle. Oh and my lupus was negative.
5-6 years ago I had normal tsh looked at was normal. Last year is when I told another lady I wanted the t4 etc looked at. Came back in normal range but she said I could have ultrasound of thyroid since there little lump in left side of neck. Not lymphnodes its been there a few years. Tiny. Never painful. Who knows.
As for lymes, this is the least inconceivable diagnosis. I pulled a dear tick off this summer that had been attached for 24-48 hours. I have multiple times. Multiple people in my neighborhood have gotten lymes. Every time I turn around someone has it here.
Is it not much of a problem in Portugal?
Wow, i feel like we'd be friends if we met.
I meant to say I had dreds with the back half shaved when I was a teenager.

Hi Andrea,

I'm so sorry I didn't reply to this before! I read it, and then things got crazy, and I lost track of myself!

Yep to the friends vibe and love the funky haircut!

Lyme disease is definitely a thing here in Portugal, but I've never had a tick on me for more than a few minutes. I'm very wary of them - and keep free-range chickens, who do pest control, eating them with gusto! They say that the tick has to be attached for at least a couple of days before the infection can transfer across. If you've ever found one on you with no idea of how long it might have been there, then it could be a possibility. They can also sometimes go undetected under hair (creepy little monsters )

Your lumps in strange places sounds like a real head scratcher! I'm so sorry you're working through such a complicated health picture. Reading a little more this morning, I guess they could be cysts forming and then dissipating, but I'm just stabbing in the dark. Can you get one biopsied? That - and hair loss, from the sounds of it - could all fit with lyme. Have you got a doctor on board with pursuing the puzzle right now?

One thought on lupus: while its better-known form is incurable, there is an autoimmune phenomena called "drug induced lupus" that can come on with medication, and then disappear after the medication is withdrawn. It apparently leaves the sufferer more vulnerable to full-blown lupus afterwards. I suspected I had this around five years back when experiencing awful side effects from an antidepressant - I had the butterfly rash and everything - but was with a useless doctor at the time, and didn't get to the bottom of it before the symptoms cleared up.

Wishing you luck for the next evolution of your quest

 

[Momzilla]

Hi Jemima,
Thanks for the reply. I actually have a doctors appointment tomorrow to get my vyvanse renewed and I'll be seeing someone new at the practice. Keep you posted!

 

[Jemima]

Hi Jemima,
Thanks for the reply. I actually have a doctors appointment tomorrow to get my vyvanse renewed and I'll be seeing someone new at the practice. Keep you posted!

Good luck!!

 

[Badger]

I feel it's something we're predisposed to that manifests with significant stress. My late mother suffered with pain her whole life and it seems like I take after her. Surprising to see aggression is linked, I seem to have spent a lifetime swinging between depression, anxiety and anger. It's a shame but I've literally injured myself in lashing out in the past. I'm culpable and trying to come to terms with the lasting impact.

 

[Jemima]

I feel it's something we're predisposed to that manifests with significant stress. My late mother suffered with pain her whole life and it seems like I take after her. Surprising to see aggression is linked, I seem to have spent a lifetime swinging between depression, anxiety and anger. It's a shame but I've literally injured myself in lashing out in the past. I'm culpable and trying to come to terms with the lasting impact.

It's funny, when I went to the psychologist for help with fibro, the first thing he asked me about was whether I was feeling angry and aggressive - that surprised me too.

I think, Badger, while it's valuable and right to introspect and process the things we do and their impact - on ourselves and others - it's also good to recognise that there is something that we didn't choose driving the feelings that sometimes lead us to act in a way that doesn't reflect who we are underneath it all. Self compassionate is so important - we have the right to trust in our own integrity

 

[Badger]

It's funny, when I went to the psychologist for help with fibro, the first thing he asked me about was whether I was feeling angry and aggressive - that surprised me too.

I think, Badger, while it's valuable and right to introspect and process the things we do and their impact - on ourselves and others - it's also good to recognise that there is something that we didn't choose driving the feelings that sometimes lead us to act in a way that doesn't reflect who we are underneath it all. Self compassionate is so important - we have the right to trust in our own integrity

That's very true thank you, it's something that's taken most of my life to realise. I'll be trying to be kinder in future as I attempt to move on. I'd also encourage sufferers to be kind to themselves, it's such a risk to our welfare getting caught in that vicious cycle.