Is getting a fibromyalgia diagnosis worth it?

Korki

Member
Joined
Aug 28, 2021
Messages
11
Hey!
I'm 21 and have had fibro for I think around 7-ish years.
I want to know if getting diagnosed is worth it. I have a major doctor phobia due to some terrible experiences, and I don't have really great insurance.
My grandmother and great grandmother had fibro.
Also, please don't list alternative treatments thanks ☺️
Thank you for your feedback 😊💜

List of daily symptoms:
Headaches
Nerve pain
Joint pain
Pressure point pain
Stomach upset
Insomnia
Chest pains
Fatigue
Dizziness
Brain fog
Fever
All-over aches
Sensory overwhelm
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi there.
Getting diagnosed is a good idea, simply because the process of diagnosing it involved testing for and eliminating the other disorders and diseases that cause the same symptoms as fibromyalgia. If you have something else, it may be treatable or curable and needs a different kind of attention from fibro, and so it's actually pretty important for you to know what you really have.

The process is often arduous and unpleasant, to be sure. But it is worth it because if you don't know what you actually have you cannot know how to approach it. It's easy to self-diagnose from symptoms, but those same symptoms can be many other things, so diagnosing yourself can be a dangerous thing to do.

The other thing is that if you have a formal diagnosis you can put that on paperwork which is often required for insurance to cover anything. this is a secondary reason, but just thought I would mention it.

May I ask why you do not want to hear about alternative treatments? I am only wondering and not wanting to push anything on you. What treatment would you use or are you currently using?
 

Korki

Member
Joined
Aug 28, 2021
Messages
11
Thank you for your feedback! ☺️
I don't know if I'm going to try and cure whatever it is I have anyway. Natural cures don't work and I have extreme reactions to medication because of being an HSP.
Just cope and survive is for me I guess 😅😂
I don't like alternative methods because of some really bad experiences with other natural "cures", and I've basically tried them all. I don't really like to talk about it ☺️
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Thank you for your feedback! ☺️
I don't know if I'm going to try and cure whatever it is I have anyway. Natural cures don't work and I have extreme reactions to medication because of being an HSP.
Just cope and survive is for me I guess 😅😂
I don't like alternative methods because of some really bad experiences with other natural "cures", and I've basically tried them all. I don't really like to talk about it ☺️
I can understand your caution, Korki, but I can also say that building up a range of strategies - including what Sunkacola always advises, and taking several non-prescription supplements - has helped me take my symptoms down to a small fraction of what they used to be. No "cures" for sure, but a big difference. By all means be cautious (I'm sure you have your reasons) but maybe consider not being totally closed off from the experiences of others and new studies - you never know if something might change your life!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Thank you for your feedback! ☺️
I don't know if I'm going to try and cure whatever it is I have anyway. Natural cures don't work and I have extreme reactions to medication because of being an HSP.
Just cope and survive is for me I guess 😅😂
I don't like alternative methods because of some really bad experiences with other natural "cures", and I've basically tried them all. I don't really like to talk about it ☺️
There are no "cures" natural or otherwise. If there were none of us would be here.

However, the more healthy you are overall, the less trouble you will have physically, whatever condition you have. There are many ways that can help you very significantly in your coping. :)

I came to the conclusion that I had to help myself, just as you have. I also found that taking action is a good antidote.

So.....that's what I did and the fact is it changed my life for the better. A long period of research, experimentation and trial and error followed that led me in many different directions. Some were dead ends, and some were good ideas but didn't work for me, and other things did work and made my life easier.

These days, while I still have fibro, still have chronic pain, and still get laid low and even incapacitated with it at times, those times are less frequent and often the pain is less severe. Overall my life is better, and while I still cannot do what I used to be able to do I can do enough, if I manage things the best I can, to make my life livable and acceptable and enjoyable.

I put what I learned and a lot of tips, options, and things that I hope will be encouraging into a post. Check it out, and see if you can start trying something there. And if you have questions, feel free to ask!
 

Uhura

Active member
Joined
Mar 20, 2021
Messages
40
Reason
DX FIBRO
Diagnosis
01/2007
Country
US
To me it is worth it. But I didn't suspect I had it until I was diagnosed. But it is a personal decision.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I don't know if I'm going to try and cure whatever it is I have anyway. Natural cures don't work and I have extreme reactions to medication because of being an HSP.
Just cope and survive is for me I guess 😅😂
I don't like alternative methods because of some really bad experiences with other natural "cures", and I've basically tried them all. I don't really like to talk about it
Hey Korki!
Hmm, hard to talk and answer questions if you've already made up your mind about so much! :cool:
But if you "don't know" if you're "going to try", maybe you haven't yet... You're 21... maybe time will change your mind, or maybe your symptoms getting worse will... but I sure hope not.
The other day someone on a (rare) German forum said at 68 she's too old to want to take time with treatments to alleviate her symptoms. After I asked back she agreed that her symptoms aren't too bad, and that her main course of action is to watch out for triggers and prevent or reduce them, is that maybe what you mean by "cope and survive" too?
I have a different motivation because I can't do much any more, and want to do more again. Also because I've learnt to enjoy self-caring and it's fun trying out treatments, even if most hurt me like hell. That can't scare me at all.
BTW: Really, you've tried them all? Wow - I'm curious. Pity you don't like to talk about them, but I respect that. And likewise I won't go into details here, but my list is probably more than 100 and growing, esp. if I include 30+ types & sub-types of diet, 30+ types of physio, 40+ types of supps & herbs, the various ways of alleviating and preventing triggers, and the many different kinds of mind matters like relaxation.
But maybe you are just as allergic to the word "cure" as we here are, since a few people tout that as a viable possibility and we tend to think of people being cured as not having much symptoms and probably not really having had FM, since our reality is that some of us are doing so much and only progressing in baby steps.
If you're here 'just in case' or 'just to vent'? You're welcome for that too.
It's good to know that you don't want to discuss various things, at least at the moment, but asking a question generalized to "is it worth it" (implying: for most/everyone) is asking for "trouble" in the sense that it is difficult to answer without mentioning treatment types, so forgive us for our gentle hints...
For some, getting a FM diagnosis is something to give them some peace of mind, they even do the co-called "FM/a"-test and believe the result altho it isn't accepted by research (at least not yet). Most of us don't need this tho, and it certainly doesn't seem to be a necessity for you, it's rather the opposite.
"major doctor phobia" sounds like your own kind of diagnosis and like an unchangeable fate... You haven't discouraged talking about that, so I hope it's OK to describe that my take on it is that I saw 46 docs in 1.5y, incl. a fibro/rheum. clinic (yep: pretty good insurance) to make sure everything was sorted and some caused me more mid-term pain than the FM itself. But they served me and a few still do in this respect, and I educate them about my short-term fails and mid-term successes and they give me fairly reasonable feedback and the occasional idea. Bottom line: It's good to self-advocate (which is harder when you're young) and take as much control of our appointments and what we let docs do to us; that way it's possible to overcome doctor phobia and decide ourselves which people, diagnoses and treatments suggestions we respect. Then again maybe avoiding doctors maybe enough for you "to cope and survive". Just heard the other day about a person cigarette and alcohol addict saying he'd never been to a doctor. It's your life.

Oh, almost forgot to anwer the thread question...: Since I concentrate on preventing or alleviating each symptom singly I don't care one bit which of them "is fibro". But the diagnosis helped me find people with similar symptoms and their experiences, in my case treatment ideas which won't cure me, but has greatly improved my quality of life.
 
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