Depression

Fibrofighter39

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So yes it turns out that elatrolet was not the cause of the overwhelming feelings I have been experiencing lately. How do i know that..oh well it has been about 5 monthst that i am off of it...i still struggle with feelings of crying ....i felt okay for about two months and it hit me back last month lasted 4 a week..then felt okay..and now it is back...i do not know what triggers it exactly..
My period? Stress ( which is more likely) all i know that it is real and overwhelming
I don't remember who here told me just remember depression won't kill you ...this sen has helped a lot..thank u
 

MamaCJEGZ

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Apr 17, 2022
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I battle with it too big time. What have you done to help with these bouts? Honestly, i have had to learn how to take care of myself for the first time and it's been hard. My journey has included a trauma counselor and learning how to empower myself. I did NOT say I was good at it; but it's working and I'm starting to see connections between my pain and what I'm feeling more quickly. That way I can do something about it. For example, stretching, my therapy exercises, a work out (yes, sometimes its just a walk), supplements, or simply resting.
 

Fibrofighter39

Active member
Joined
May 7, 2021
Messages
44
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
NY
When i have these bouts i feel like " oh my God..that is it...my life is horrible..i just want it to end" ...it feels awful...to tell you the truth i feel better when i sit with people..the feeling us somehow lifted...i also found it useful to go to parks..nature makes me feel better...
I am sorry u struggle like me i know how awful this coukd be...

Do you feel like you want to cry but you don't...???? Like a heavy feeling...hot flashes? Weak body??
 

MamaCJEGZ

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Apr 17, 2022
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Omg! I can't release emotion on my own. I need help via chiropractor, accupuncture, and massage therapy. Oh yeah, let's not forget the brainspotting. It's like the emotion and my body gets stuck when i need to go see one of them. I however am getting better at knowing the differences in what i'm physically feeling to know what i need to do. Hope that makes sense. Then i add in supplements to help even me out and the inflammation. It seems like 2 steps forward and one step bsck.


Im glad you have found things that minister to your soul to help with that. 💗💗
 

MamaCJEGZ

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And I totally get why people become substance abusers and commit suicide. In regards to ending it. I also know that giving in to that just means I let them win. I think about 20% of us have a genetic link the rest is caused by some form of trauma. I'm not in that 20%. My faith and kids keep me going. Those things have entered my mind before. I know when I feel that way I need to take inventory on what is wrong, do something about it and be patient. Sometimes it's rest, taking a 5-htp or rest. I would like to think I can completely relate.
 

JayCS

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2,152
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DX FIBRO
Diagnosis
02/2020
Country
GE
depression won't kill you
Hmm, not sure who will have said that, altho I'd've thought @sunkacola; and can't find it; only "pain won't kill you": by @Jemima, gladly adopted by us. But I'd say you may well have adapted that to depression as a kind of "mental pain", I spose?
I think about 20% of us have a genetic link the rest is caused by some form of trauma.
Best to be careful with numbers, since most fibro-research is still in the kindergarten stage. :cool:. Hard to put numbers to either, studies vary quite a lot, but to say "the rest" would be stretching it a lot, some say 20% for trauma, some more, whilst some studies say almost 50% for genetics, others less.
Saying it's necessarily one of the two would also open the door to people going back to it being all "mental" - if it doesn't run in our families we must be traumatized... In my case neither (worked thru any traumatizing stuff successfully long before fibro). 🧐.
The studies also don't think of it or count it as "either or", so people may have both the trauma and the genes, again making the numbers more complicated.
 
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MamaCJEGZ

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They have certainly found that it's NOT all in our head, psychologically, though that's how many are treated. It is neurological though. Being treated like we are drug seekers is rather infuriating as well. Trauma can be anything from a vehicular accident, surgery, ptsd issues, and certainly not just from our families. Many outstanding articles on it in Pubmed, NCBI, and fibromyalgiaresources.com, You are 100% right the learning in still in it's infantcy. I can't argue with that. I am writing what i have read so I will look for that so i can reference that. I have been learning a lot about this through the book The Body Keeps the Score by Bessie Von Der Kolk, MD. It's very fascinating and makes sense.
 

JayCS

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It is neurological though.
Hmm, the notion that fibromyalgia is a form of central sensitisation (and the pain might be a third type, called things like "nociplastic" etc.) is perhaps still the most accepted one of about 6 more common hypotheses at the moment, even after the Goebel / Anderson study July/August last year that claimed fibro is autoimmune, and not neurological.
The Body Keeps the Score by Bessie Von Der Kolk
That'd been Dutch-born psychiatrist Bessel van der Kolk... As a PTSD expert, not a fibro expert, he would of course have a bias towards explaining fibro with trauma. I'd still be surprised if he can substantiate a claim that as you suggested not only 80% of fibromites are traumatized, but that their fibro is caused by the trauma.
I am writing what i have read so I will look for that so i can reference that.
Unfortunately it's against forum rules to link things, but we can cite things and name sources.
If you find something stating 80% and talking about causes, I can quickly find you 10 or 20 studies that put it very differently.
Trauma I'd say is classified as a kind of starting point of fibro, like viruses, intolerances and deficiencies, not as a cause.

Fibromyalgiaresources.com by the way I don't see as a reputable source, too many silly things on there. But I do sometimes use even "silly" sites as a brainstorming to find the grains of salt behind it, using pubmed, JAMA etc.
 

MamaCJEGZ

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1) I have not seen a lot of those other theories. I AM very interested in looking into them and think it is worth my time. So thank you for pointing me in a direction. I have found mention of those other theories but not a lot to back them up.

2) I did not say where I saw the 80% but would need time to look for that. I just said I have been learning a lot from van der Kolk and it does make sense to me. But it does not mean he doesn't have valid points. Granted he is a trauma doc so he would have biases but everyone does.
I guess I did link. Though, I did read the guidelines I did forget as I was in the mindset of sharing general resource of where I got my info from. I apologize for the offense, none intended as I was sharing what I have learned. Given that you view those as silly and take the info with a grain of salt, it would be helpful to know and learn other places of where to look for other reliable information.
 

MamaCJEGZ

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With that said, I have plenty of autoimmune diseases in our family. Anti-inflammatory supplements, as mentioned before, have helped with pain so it's not far fetched. So, I really am interested in more info
 

JayCS

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1) I have not seen a lot of those other theories. I AM very interested in looking into them and think it is worth my time. So thank you for pointing me in a direction. I have found mention of those other theories but not a lot to back them up.
Apart from the recently upbolstered 2) autoimmune hypothesis, there's the connection with 3) SFN = small fiber neuropathy that has been studied for 10 years, then due to researchers finding increased hand nerves 4) AV-shunt-disorder, became trendy for a while a few years ago, 5) the neuroendocrine link has a little evidence for it, 6) mitochondrial involvement (ATP / CoQ10) is "the" cause for some, 7) vaguer: underlying issues like simply the chronification of pain(s), sleep disorder, low GABA, other diseases (e.g. SPD). 8) genes. And a recent one "my body" has come across is 9) MCAS, mast cell activation syndrome. Two more I know of too silly to mention.
And then there's the large amount of apparent biomarkers (1. cytokines/chemokines/mast cells; 2. salivary biomarkers, 3. muscle pressure, 4. microbiome/molecular/glutamate, 5. hormones like serotonin, 6. protein backbones 7. BCAAs and 8. insulin resistance).
(If you search for "Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them" on the web, you'll find my overview with links.)
Altho these are more obviously not "the" cause, they raise the question how many of the cause hypotheses are actually also only "biomarkers", i.e. actually more an effect than a cause. Goebel's 2021 autoimmune study managed to reverse symptoms in mice by changing their autoimmune (immunoglobulin) state. That sounds clever. But I manage to reverse quite a lot of my symptoms by increasing serotonin using GABA: That doesn't prove that GABA or serotonin is the cause, even for my fibro.
And going back to the cause as supposedly being "CSS": "Nociplastic" pain as I mentioned has recently been coined by pain researchers as pain without a) cellular or b) nerve injury. But that's just a description of pain without a cause, which may mean as yet not being able to find a cause. Also they don't know why it happens: they don't know a cause of this "pain without a cause", which to me means it is still just an auxiliary construct. I also don't find it particularly helpful to use hyperalgesia and allodynia to show that the nervous system isn't working right, as many of us don't have these, and even if they did, these do not prove that there is nothing there, as if it were simply the body "making up" the pain.
When I compare the way researchers talk and write to my symptoms, of which pain is only a small part, I have the feeling there is a wall of fog between them and these symptoms. One giant part of the problem is that scientific medicine is based on measuring, but they're like blind people measuring different parts of the elephant, so causes, explanations etc. are hard to find. Another giant part is that there are so many types of treatment out there, and only some of us are trying "everything", a few of us are finding one or a few things as their miracle cure, but most of us are only being helped a little bit. A third part is that we are so different that it seems likely that there are quite a few different forms / subgroups of fibro, altho our core symptoms (unexplained pain/energy/sleep/gut) are very similar. A fourth is that most fibromites have difficulty describing their symptoms precisely. I go to great lengths to get that sorted, which has helped me get all localized pains down.

Are the theories about fibro a good way of spending our time? Well, there's not that much to read, and they are interesting pointers to understand how our symptoms work, to possibly find out what triggers & what alleviates or even prevents them. But I think symptom analysis and tracking, and trigger hunting are definitely more important, putting theory into practice.
With that said, I have plenty of autoimmune diseases in our family. Anti-inflammatory supplements, as mentioned before, have helped with pain so it's not far fetched. So, I really am interested in more info
Sounds then as if this might be 'your subgroup'. :). I was keen on the autoimmune explanation as long as cryotherapy helped me, but I seem to have moved on to a different stage. Finding I now have MCAS has shown me that the immune system can cause problems even without autoimmune processes being involved, and it seems to explain quite a bit, but knowing this has helped less than the additional problems it has caused...
I spose I did often use my personal theories of what might be wrong to what might help me most, to prioritize treatments, but essentially I had to try far above 100 treatment types and turn over the stones again and again, like you said changing doses etc. In the end it's more about improving my sense of my body and its reactions. But any little idea something I read or a doc said to understand the way our bodies are sposed to work and testing whether mine does or not helps.
2) I did not say where I saw the 80% but would need time to look for that. I just said I have been learning a lot from van der Kolk and it does make sense to me. But it does not mean he doesn't have valid points. Granted he is a trauma doc so he would have biases but everyone does.
Agreed!
Given that you view those as silly and take the info with a grain of salt, it would be helpful to know and learn other places of where to look for other reliable information. ...
In case you misunderstood my last sentence in the post above: I regularly (>10h/wk) read studies on pubmed, JAMA and the other study sites to check up on what sites like healthrising, healthline, verywellhealth etc. as well as German sites are suggesting. It's only fibromyalgiaresources I was referring to as often "silly". Finding a supposed connection between fibro and autism there the other day, and only there, I did read what they were saying, but was proven right that it was 'nothing much'. Similarly, the list of "251 symptoms" of fibro provided there is equally uncritical, but I did use it as basis for my own better categorized list of symptoms all the same.
I actually don't read thru "websites" much, tho, I look in all detail for answers to questions on forums or my own.
I guess I did link. ... forget ... sharing general resource ... offense, none intended
No worry! I think it "hurts" a bit when our posts are deleted - apparently without forewarning? I sometimes get "awaiting moderator approval", even without a link in it. If that happens it's perhaps best to copy the post somewhere else to reuse it.
You're right: other forums allow pointers to general resources. This one only to internal ones. Due to bad experience I think, also different platform software and amount of publicity (everything is public here, that might attract spammers' attention).
 

MamaCJEGZ

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Apr 17, 2022
Messages
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Wow!! That was extremely helpful. Thank you. It opened my eyes and reminded me how focused doctor's get and their opinions. I have read on some of those and think I forgot, if I have to be honest. I am looking forward to specially investigating some of that. Unfortunately, I can only do it in bits and pieces b/c of the season of life I'm in. Which probably explains why I have forgotten and went down the path that it did. It sounds like I need to give those other theories more thought. I definitely think fibromyalgia is a complex problem. I like how your brain works. Thank you
 

Gianna

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Apr 5, 2022
Messages
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For me , my faith going to church, having church friends that are understanding , kind ,caring and loving has help me cope a lot. Cleaning my soul of the struggle and mistakes of the past is a big one for me. Read books of faith and acceptance with grace and hope is a must for me. Doing good works for others like donate food , cloth . Get involved with my niece that has kids help me focus on others more than myself. I have decided to accept my condition, cry of pain and feel the depression and all the other symptoms when is really bad and also during those really bad moments, keep my thoughts on my next project to do. It has help me for the past 16 years. Not easy. My fibromyalgia is bad I also have autonomic brain dysfunction and much more. God bless
 

Stressedout

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Jun 18, 2022
Messages
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Control the things you can- stretching, a little exercise, sleep ( very important), breathing correctly. PMS is real. Pay extra attention to self-care during this time, even if it’s just for a few minutes.
 
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