Reactions to diagnosis of fibromyalgia? Happy? Relieved? Sad?

Eff2013

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I have finally been diagnosed recently with fibromyalgia through an over the phone appointment because of covid 19. I have known this for years and it was finally confirmed. I don't have Lupus or any other autoimmune disease. This is supposed to make me feel happy, right? Well I don't know. How did you all feel when you got the diagnosis? I suppose the only thing that makes the diagnosis bearable is that the condition doesn't damage your joints, muscles, or internal organs. (although I'm having a hard time believing that).
Interested to hear how you all felt ❤
 

RLG

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Eff, It is a Pandora's box, isn't it? I felt/feel/think many different things about my diagnosis. At first I felt 'affirmed' and really hopeful because I knew for a long time that's what it was. I felt huge relief that I could finally have some treatment of some kind to be able to get back to my life. But then I was immediately met with prescriptions that cause serious side effects (like Cymbalta, which I declined to take), and skepticism from certain people in my life. Along the lines of , "well I read that Fibromyalgia is a 'syndrome' not an actual disease." Umkay, thanks for playing, right? THEN, I was finally DX with PsA 2 weeks later, so I guess the skeptics have literally no arguments now lol Pain is pain is pain. I call it my effin-P (ha?) Fibro and PsA; fatigue and pain. And honestly, after a month of running around to appts. in a pandemic and so many hours researching about the things (some very scary) that I've been told by medical pros, I am now just exhausted and ambivalent about it.

I have a hard time believing that Fibromyalgia isn't progressive. It may not be degenerative per say, but in my view/experience it does get worse over time. One thing's for sure, if it ever gets BETTER I haven't heard about it.

PS--<<hugs>> to you!!
 

sunkacola

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The diagnosis as such is not really useful for anything except that now you have something to tell people or to write down on a form and most insurance will cover it, as opposed to not having a diagnosis. That's useful, but since there is no universal treatment, nor cure, it's not helpful in any other way.

I think most people are relieved that it is not all in their heads as they may have been told, but I personally didn't have any emotional reaction to it at all. Just started doing research right away and trying things, but I had already been trying everything I could find that might help for years before I got the dx, because I knew something was wrong.

As for whether or not it affects internal organs, or is progressive, there is no medical evidence that it is either one of those things. I would strongly advise against thinking about those things a lot or worrying about them because that will only serve to stress you out, and stress will definitely exacerbate all of your symptoms.

RLG, They do call it a syndrome instead of a disease, but that's not anything to be upset about. That is just medical terminology and has nothing to do with how it affects people. They have different categories according to their own criteria, but it makes no difference what they call it. You can tell those people that many things that cause disabilities are called syndromes instead of diseases, and that doesn't make them the least bit less severe or real or debilitating. You could even look it up and then present those unhelpful idiots with the definitions and educate them. :)
 

Eff2013

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Yes RLG, it sure is a Pandora's box. No two days are ever really the same. You never really know what the day will be like. I know that even people without this condition don't have total control of what a new day will bring but fibromyalgia makes it even more unpredictable. Unfortunately I too have a hard time believing that fibromyalgia isn't progressive. I know, I am repeating what I already said above (sorry). The thing is, is that every winter for the past so many years I develop new symptoms and they just keep adding.😔
RLG, sorry to sound ignorant ,but I am not quite sure what PsA stands for. Is that psoriatic arthritis?
One thing for sure is putting a name,label or whatever you like to what we are experiencing makes it a little easier instead of imagining all sorts of things in our heads. Hugs to you too. 🤗
 

Eff2013

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Thank you for sharing your reaction Sunkacola. It's admirable that you didn't have an overly emotional response. Knowledge is Power, and I've found it helpful to research and trial different things. And knowing my diagnosis now has given me a sort of power. It's interesting how everyone reacts differently. 😊
 
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sunkacola

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Having a big emotional response to something like this only makes things a lot worse, so it is to be avoided.
Truth is, having a big emotional response to anything negative only makes things worse.
Best thing to do is stay calm and get information that will help.
 

RLG

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Eff, yes--PsA stands for Psoriatic Arthritis.

I agree wholeheartedly that 'knowledge is power.' We must be our own best advocate. Managing chronic pain and health issues is a very personal journey. Professional healthcare can be...sketchy? Experimental? Even harmful. I feel like sometimes--often--the patient has to educate the pros.

I may be good for platitudes, Eff, but here's what I know for myself and have observed about your postings here--attitude is everything. We are own heroes and benefit from sharing our experience with others. It helps to have a support group like this and by researching/reaching out we empower ourselves. What works for one person may not work for another.

I honestly feel better from a small dose of kindness from another person than a dose of any treatment I've tried so far. Truly. I tell people I will literally PAY THEM to follow me around and say nice things to me lol My husband hung a sticker on my wall that says "You Got This!" And one of the reasons I love Tae Bo so much is that Billy Blanks says things like, "I'm not giving up on YOU, because I'm not letting you give up on ME."

Now that you know, eff, the journey moves forward. Take pride and comfort in the knowledge that you made it this far. Empathy for the struggles of others reminds us that everyone has mountains to climb. You are a fighter, I can tell. Eff...You Got This!!

Onward!
 

Mirador

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For me, the diagnosis confirmed a suspicion I'd had for a long time. I choose not to medicate, so nothing has really changed except now I check the "fibromyalgia" box on medical questionnaires - along with hypertension and whatever else I've been diagnosed with. Fibromyalgia isn't a disease, it's a set of symptoms, and more accurately called a syndrome.

As is always said, there are numerous signs and symptoms of FM, and "everybody is different." I think there's a reason for that. I think it's that it's not just one thing causing this syndrome in all of us. My own personal guess is that some day FM will be finally dissected into various different disorders/conditions and will no longer be what is basically a catchall diagnosis. I'm no longer young, so I won't hold my breath that I'll live long enough to see that happen. But I hope you all do.

To be honest, my feeling about being diagnosed is that it isn't particularly helpful one way or another, except to differentiate it from such tedious things as muscle sprains, arthritis, stress, and other miscellaneous complaints.
 

Eff2013

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Mirador, you make a really good point that "everyone is different". The more I read posts here the more I'm convinced that fibromyalgia is a different experience for every person. Yes, it's a SYNDROME. What triggers my fibro might not effect others in the same way. For example I find that I am unable to function during the winter months (my body literally stiffens up like a board) and others have said that summer heat bothers them. The whole thing can be very frustrating.
Getting the diagnosis for me was a kind of releave if you will. Autoimmune disease is very familiar to me. My mother had scleroderma and my farther had psoriatic arthritis. So when I had strange and unusual symptoms in the past I would imagine all sorts of things.
Let's hope that one day soon the medical profession gets their act together and finally gives us some answers. The catchall diagnosis can be very frustrating for a lot of people.🌹
 

Eff2013

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Sorry about the two small spelling errors😔
* father
* relief
 

Eff2013

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Eff, yes--PsA stands for Psoriatic Arthritis.

I agree wholeheartedly that 'knowledge is power.' We must be our own best advocate. Managing chronic pain and health issues is a very personal journey. Professional healthcare can be...sketchy? Experimental? Even harmful. I feel like sometimes--often--the patient has to educate the pros.

I may be good for platitudes, Eff, but here's what I know for myself and have observed about your postings here--attitude is everything. We are own heroes and benefit from sharing our experience with others. It helps to have a support group like this and by researching/reaching out we empower ourselves. What works for one person may not work for another.

I honestly feel better from a small dose of kindness from another person than a dose of any treatment I've tried so far. Truly. I tell people I will literally PAY THEM to follow me around and say nice things to me lol My husband hung a sticker on my wall that says "You Got This!" And one of the reasons I love Tae Bo so much is that Billy Blanks says things like, "I'm not giving up on YOU, because I'm not letting you give up on ME."

Now that you know, eff, the journey moves forward. Take pride and comfort in the knowledge that you made it this far. Empathy for the struggles of others reminds us that everyone has mountains to climb. You are a fighter, I can tell. Eff...You Got This!!

Onward!
Thank you RLG for your beautiful and caring words. You seem like a person with a heart of gold. Your compassion and understanding is seeping through the computer. Your response here warmed me inside. And yes, it sounds like a fabulous idea to have someone follow us around, telling us 'nice' things.
How wonderful life would be.
It is really nice having this support group here where we can share our experiences and stories.
Sending hugs 😊❤
 
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Kittykat12

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Mar 1, 2020
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DX FIBRO
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02/2020
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I have my phone consultation on 8th September. Im worried they won't say its fibromyalgia but just my age or in my head. I just want to know and can get on with it.
 
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Hi E,
When I first was diagnosed I thought I had just got a death sentence. I kept thinking about my future and what it would entail. I sat and moped and felt sorry for myself for a few months, which made me feel worse, then I sat up, gave myself a talking to and determined I was to not going to give up! I watched my Mother fight and win cancer twice so I know I had fight in me...
I started researching in what I could take supplement wise to help me, I started exercising and just made sure to keep doing the things I enjoyed. Each one of us are different in our symptoms, no 2 days are the same, you will have good days and bad days. On those bad days just rest. I do believe it progresses with each year, I have found the summers are worse for me. But please try to keep moving and only you can decide what to take and how to handle the symptoms.
 

RLG

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I have my phone consultation on 8th September. Im worried they won't say its fibromyalgia but just my age or in my head. I just want to know and can get on with it.
Good luck with your consult kittykat!!
Prior to my exam with the internist I spent some quiet time preparing mentally for the outcome--whatever it might be. I visualized being articulate and understood by the medical team there. I pictured leaving there with a clear calm answer. Don't know whether it worked or not?? BUT, that is exactly how it went down.
 

sunkacola

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As is always said, there are numerous signs and symptoms of FM, and "everybody is different." I think there's a reason for that. I think it's that it's not just one thing causing this syndrome in all of us. My own personal guess is that some day FM will be finally dissected into various different disorders/conditions and will no longer be what is basically a catchall diagnosis.
This is exactly what I have always thought to be true, and have said many times. But I am not holding my breath for that either, because it doesn't seem to be very high on the priority list for the medical establishment. Especially these days.
 
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