Zenia

183d

This is gonna sound crazy... Here goes, I was diagnosed with fibromyalgia over a decade ago... it's old news. I'm used to it. I'm even comfortable with the diagnosis because I've learned how to live with it. But a lot of people brush it off, or don't believe. Or think it's not a big deal...
Well just a couple days ago I went to the doctor because of thumb pain, and they drew blood to run a test for lupus and rheumatoid arthritis, and a crazy small part of me wishes it would come back positive so that people finally believe me. that they believe something is actually wrong, that the pain is real and debilitating. I get so tired of being told to just tough it out, or other variations. I'm just so tired... I know it's crazy. but it would be nice to not have to deal with being told I'm a wuss and just need to toughen up

Generalized pain

Chronic Generalized pain

Fibromyalgia (FM)

Anxiety (Including GAD)

Rheumatoid Arthritis (RA)

View all
  • Elladolores

    183d

    I’m sorry you have to go through this. I completely relate to you, I have FM since 2009 and got so used to it, actually becomes part of your life. I don’t let fibromyalgia live my life I chose how to live. So people think I’m faking it or just trying to get attention. A person who work in the medical field ask me if my conditions were real?. I was very offended. I realize that people alway going to speak and assume your pretending. Like seriously who want to pretend to be sick for so long, fool the SSA and doctors, that’s exhausting. My advice F…. Everyone, this is your journey is your body only you know how it feels and function, and only you can judge yourself. F… them. Ignore the comments and be sarcastic it actually shut some people down. Like when I was asked is my condition was real, are you really still sick?? I replied I don’t question your stupidity you can’t see your stupidity just like You can’t see my fibromyalgia.

  • PurpleMage

    183d

    Know the feeling almost makes me wish my pain was visible just so people could see what I deal with

  • Katgal

    183d

    💕

  • Knightstarr

    182d

    I have been with my partner for 10 years and just the other day he told me that he thinks that I am making up most of my pain and that he thinks that I am making myself worse on purpose. If they can't see it they can't believe it. I don't understand how he can't see my pain and suffering when he watches me struggle to do simple things like go to the bathroom or grocery shopping or making food. It really really really really hurt me to hear him say those things but I also understand why he thinks that because he sees me functioning in so much pain every day that he literally can't believe that it is as bad as I say. Sometimes I pray to get cancer just so people will treat me with some compassion and understanding

    • Zenia

      182d

      I'm sorry your partner said that 😥. I'm lucky my partner believes me, everyone else doesn't but I do get some support

      • Knightstarr

        182d

        he is usually very supportive I think that he was just trying to get to me because he was having anxiety. But I also think that it is at least partially true that he doesn't believe the absolute severity. How can he if he sees me up and about every day and when he is in pain he can't even get food for himself? How can anyone understand if they never experienced it?

    • juicydoubles

      179d

      I identify with all you've said, but in my experience people who lack empathy, don't recover because you have a mainstream illness. I was fundamentally on my own for 15 years with fms (when it was considered a wastebucket diagnosis) and when I was diagnosed with breast cancer, what concern I received was forced or fake. Some people can't handle sickness, some can't handle not being the main Attraction. Remember you're illness can be stabilized or even cured. Theirs , not so much. Take care of you

  • mustardseedfaith7

    182d

    I'm so sorry this is happening to you. I sometimes feel the same way. My pain is so bad at times that my muscles just give up and I end up with 0 strength to stand. I tell them, let me see you handle my illness for 1 day, you wouldn't even survive. Let's see whose the one that needs to toughen up? To be honest, I feel that those who suffer from fibromyalgia are tough as nails. Pain level 10 for a regular person is like level 6 for us. Our bodies created a high pain tolerance over the years. They wouldn't even be able to stand in our shoes for a Day much less a few hours. May God bless you and don't worry you're not alone. #fibrowarrior

  • misunderstood

    180d

    Ik exactly what you are going through.. I even had the same thoughts when I was tested for rheumatoid arthritis and lupus and all that other stuff. I was hoping for it to be posative just the same as you. .. it really does suck when people have no idea how this really feels.

  • dailydose

    179d

    I absolutely know this feeling and have not accepted it. I am still constantly searching for a better doctor and a “better diagnosis” and by better, I mean less stigmatized and more understood. Part of me is feeling like I know there is something wrong with my body and I know there is a good reason and I want a better explanation and more answers seeing as things just seem to be getting worse over time and the only advice I have been given is to eat better, exercise, get sleep, and try yoga. Its not good enough for me. Also, I think fibromyalgia is related and comorbid with many other conditions that I can also relate to. Every test that comes back normal leaves me feeling heartbroken because it feels like the doctor is telling me that nothing is wrong with me and that I’m perfectly healthy and that what is happening to my body is not real nor serious, and sometimes they actually say exactly that. Truth is, I feel we are being diagnosed with fibromyalgia at a time when it is poorly understood, still being researched, and still not widely understood by most practitioners and that leaves me feeling both a little hopeless and a little hopeful that in the future, things could get better. If not in my generation, hopefully for future generations it will be better. All I know is that fibromyalgia is valid, real, and life altering. I personally will not stop searching for better answers though. The tough part is learning how to accept that many people will not believe you. Even with a test result or diagnosis, misunderstanding and disbelief will still occur. All we can do is advocate for ourselves and others like us, seek out people who do understand, validate and accept our own truth, and lean on those who do their best to support and believe us.

  • MystikMandy

    179d

    I have fibromyalgia and I had spinal and cervical mris done and those popped for something I thought finally people will take me seriously NOPE

  • Evantha

    164d

    Ppl that dont have it will never understand my left hand middle finger is starting to bend..its very painful. .

  • MystikMandy

    163d

    Ya I did something to my hip and I finally went in yesterday to ask for an x ray and a referral to an ortho from the e.r. because I can't even hardly walk. The Dr was so mean to me and did absolutely nothing refused me even an anti inflammatory shot. I'm still really upset about it today. I'm tired of these people getting paid so much to do nothing but gaslight you and treat you like you're less than human and don't know anything.

  • NelCat

    163d

    I was just telling my boyfriend that I need to get a cane so that my disability looks real enough to people to take seriously! There are plenty of days I just tell people that I'm too exhausted to justify my own needs, so they can do their own research.

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