Complete despair

james95

New member
Joined
Sep 9, 2022
Messages
6
I have signed up to this forum to write this post so that I might vent a little of the shear despair I'm currently feeling. A little background about me, I'm 27. Have been dealing with pain symptoms since my early 20's, predominantly in my joints and eyes, to which there is no relief or answers.
The only answer I have ever been given is one of 'fibromyalgia' around 3 years ago. This might have been some what of a relief to finally have an answer to my pain if it wasn't for the fact that there is little to nothing known about it and little to nothing that can be done about it. It seemed to me as if the label of fibro was just given to me due to lack of evidence of anything else.

I still don't fully believe that I do have fibromyalgia or this alone, the severe eye symptoms I have just don't let it sit right with me. I've been on eye steroids for over 2 years and still can hardly look at a screen or read and write due to eye pain, my eyes are burning just writing this. I can't progress with education or simply use a computer/watch a movie for enjoyment without pain. I struggle to find any enjoyment anymore. I find it hard to talk to 98% of people about my stuggles as they never understand and comments like 'there's nothing wrong with you' cut deeper than a knife. As if all my pains are imaginary or made up due to lack of physical evidence. This includes the majority of health professionals.

The long term pain has left me constantly exhausted and hard to be around, I'm depressing, quick to anger and snappy with the people I love. I have a new family that I need to support including a 6 week old baby that's still on an icu ward and I'm wondering how I'm ever going to do this when I can hardly even keep my self afloat. I've seen so many drs, GPs, Rhumatologists, Opthomologists, Therapists and been referred to many other services I.e. physio and the pain clinic only to hear crickets for years.

I've paid for private consultations and procedures including a course of medical cannabis which did help with sleep related symptoms for a while but then resulted in severe panic attacks and anxiety during the night which I have not yet recovered from mentally.

This is my vent over for now and if you've read this monologue, thank you. No doubt I'll need to outlet again in the future.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,424
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Greetings and welcome.
I have given you some words of advice in my reply to your other post, but do want to let you know that you are welcome to vent all you want here in the venting forum. You are among people who understand, here. :)

As for believing in fibromyalgia, my personal thoughts on that are inclined toward thinking that right now it is such an umbrella term and diagnosis that it is unhelpful with the one exception of your having something to write down on forms if you need to.

I personally suspect that in the future fibromyalgia will get broken down into various components that may have effective treatments (if we are lucky). Sort of the way the term "consumption" used to be used, and now is not used but rather the names of the various different symptom-causing diseases and conditions that were under that umbrella a hundred years ago.

For now, we just have to deal with and accept what is the current reality.
Remember that acceptance doesn't mean complacency or apathy or lack of caring or action. It simply means that instead of mentally fighting what is happening ones energy is directed towards doing the things that will help.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
437
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
Hi James, I admire your strength and candidness. You are remarkably self-aware. I didn’t realize I was acting like a different person - irritable, snappy, depressing - for several years. It was the always-lingering pain coupled with my attempt to put on a smile that brewed the irritability…

It’s very hard to not let these frustrations seep into our conduct so I wouldn’t be hard on yourself. You’re doing as well as anyone in your shoes would be.

Obviously getting your pain improved would be extremely helpful. I’m just gonna throw this out there as a sort of hail mary pass but MCAS may be the cause of my fibro symptoms and by using an H1 antihistamine I got significant relief from my worst symptoms. Maybe an H1 antihistamine could alleviate something for you?

Acceptance was also a breakthrough for me - accepting that I, not a doctor, am the most likely person to improve my circumstances. Doctors are sort of like the oasis mirage in the desert 😔

As for handling the relational byproducts of all this pain: I discovered that each time I sincerely apologize for a regrettable behavior of mine I get better at avoiding that behavior in the future and I find that I can “earn” back some of the good will of others also. I guess I would call that The Power of the Apology…is that cheesy? 😬. I am much better at avoiding the behaviors I don’t like and I know apologizing has made me successful…

You are amazing. If you want to decompress/vent a little more check out our Touch of Humor thread. You can use the search icon above to locate it.

Welcome ❤️
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
437
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
James, this is how many of us feel
 

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james95

New member
Joined
Sep 9, 2022
Messages
6
Hi James, I admire your strength and candidness. You are remarkably self-aware. I didn’t realize I was acting like a different person - irritable, snappy, depressing - for several years. It was the always-lingering pain coupled with my attempt to put on a smile that brewed the irritability…

It’s very hard to not let these frustrations seep into our conduct so I wouldn’t be hard on yourself. You’re doing as well as anyone in your shoes would be.

Obviously getting your pain improved would be extremely helpful. I’m just gonna throw this out there as a sort of hail mary pass but MCAS may be the cause of my fibro symptoms and by using an H1 antihistamine I got significant relief from my worst symptoms. Maybe an H1 antihistamine could alleviate something for you?

Acceptance was also a breakthrough for me - accepting that I, not a doctor, am the most likely person to improve my circumstances. Doctors are sort of like the oasis mirage in the desert 😔

As for handling the relational byproducts of all this pain: I discovered that each time I sincerely apologize for a regrettable behavior of mine I get better at avoiding that behavior in the future and I find that I can “earn” back some of the good will of others also. I guess I would call that The Power of the Apology…is that cheesy? 😬. I am much better at avoiding the behaviors I don’t like and I know apologizing has made me successful…

You are amazing. If you want to decompress/vent a little more check out our Touch of Humor thread. You can use the search icon above to locate it.

Welcome ❤️
Thank you for this,
I have picked up a H1 antihistamine today to give it a go. I do agree on what you say about doctors. It seems there is little to nothing they can do for me in reality.
Thank you for the welcome
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
H1 antihistamine
A first generation one can make you very drowsy, even 2nd generation does me a little, so I take it before bed when I do.
 
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