I’m tired. I’m worn out. I’m feeling sorry for myself…again. Sleep has been poor from Fibro pain. My body feels like thousands of tiny knives poking me from my neck down to my toes. I want all this to stop. I need a break from fibromyalgia. Who doesn’t? I might be depressed? If I am, it’s because of how fibromyalgia controls my life. I live my minutes around “ it.” That’s all for now. Hopefully tomorrow will be better than the last few days.
I hurt! Ah! I went to church for a presentation about being trauma informed if I’m ever able to volunteer to help the refugees. I hurt before I left. But as I was sitting and listening to the speaker, the pain just intensified. I found myself closing my eyes and trying to escape my pain by numbing my mind and body. I couldn’t wait to leave. I felt like it would have been impolite to leave early. I feel like I’m pretty trauma informed since I have experienced trauma. I overdid it today. And it doesn’t take much to overdo it. I unpacked one box. One box. I feel so alone and tired. I need to think about how not alone I am? My left leg hurts so much that I feel like cutting it off. Of course I would never do such a thing. I wish I could escape for awhile.
Pain is never good, especially when the day starts with you in pain. For me that line between pain and peak pain needs to be finely managed, over do it and I’ll pay for it. It’s one of those things I need to ‘weigh up’ ie is the cost worth the reward? and I think that’s something we all need to measure for ourselves, but knowing there’s going to be a consequence for doing so.
Using your own experiences to assist others, that can be very beneficial for all involved. Having a lived experience to draw from has an empathy attached that no study can give.
I also know that having an ‘invisible’ condition doesn’t help, some people say things quite innocently ‘Ohh, you look awful…’ and I want to say "Yea, thanks for that, I love being told I look the way I feel. You think it looks bad from your side, you want to come have a look from this side…’
But instead I apologize for looking like shit, as if I have a choice or something.
You are NOT alone Freedom, this is not an easy journey for anybody and we know that because we too have to manage our own conditions, so come talk to us.
Merl from the Modsupport Team
Boy, are you right. I have the “I can’t stand the pain” negative mantra every day, in fact I remember saying it to maybe six different rheum/pain management types over the last ten years. All I can say is that a huge number of us feel the same way, starting the day in pain and ending it in pain. For me, I’ll add intermittent sedation as I’ve finally found someone to prescribe strong meds. The problem is the pain is so tough that I may still end up in pain while sedated, the worst combo. I’m pretty isolated except for my wife so I don’t have to deal with people’s responses to how I look or feel. The last (useless and crazy) acupuncturist I saw said, “wow, you’re really miserable”, summing up the last decade pretty well. I hate to think of others suffering like
I do but I do feel like part of a loose knit community of sufferers, not how I envisioned my retirement. Strangely enough, with the incidence of long covid people rising and demonstrating some similar symptoms as we do, maybe some cash will finally get thrown towards treatments that could be helpful. Good luck, man.
I can completely understand how you all feel and you all said it right when you wake up in the morning and then end your day the same way you woke up it’s just horrible and then go through the day like I do working a 50 hour week I come home like a cripple and it’s it’s horrible every day is horrible and Saturday and Sunday I can’t move I just can’t move I have no life it’s pain all the time and no one should have to suffer or endure being depressed to me as part of it because that’s what I am and then to pretend you’re happy or whatever is more work than anything else and I’m so tired of people saying oh you don’t look good today oh you don’t look good today the more people say that the worse I feel I don’t need to constantly be reminded I know what I look like I live with it every day and something that’s never gonna go away for me meds don’t help either every morning I have to sit at the edge of my bed and wait 5 to 10 minutes before I can actually get up and move it’s just I don’t know I feel like it’s a punishment
I often think people just don’t know what to say to me about fibromyalgia ; so they use what visible cues they see & they notice today it’s is a bad fibro flare day . They say “you look like you haven’t slept in years , or you move like a 100 yr old.” I think their intention is to let me know they notice my disability today and have sympathy. It’s not helpful but I prefer those comments over the “ wow you look great I can’t believe you don’t work anymore.” Mostly I’m tired of family members who don’t bother educating themselves enough to know that a good day is a blessing because they are rare for me . They say things like “ are feeling better now “ or “has your situation improved.” I want to scream ! I manage every day, every day I battle like a Fx#*ING warrrior and the very next day wake up and do it all over again , so when they say “ you don’t look sick or depressed “ I want to say to them then “ I WON TODAY - I DID MY BEST. But I’m not impolite LOL . I think depression for me is because I still feel the profound loss of my life before this disease. It’s exhausting and you must chose that battle or will yourself through it every day or it will destroy your mind before the pain destroys your body . Not feeling to positive today , I hate getting on here and whining so I’ll stop. Take care of yourselves.
Most of the time I want to scream at the doctors and say WOULD YOU PLEASE HELP ME! I THINK THERE’S MORE GOING ON THAN FIBROMYALGIA!!! I haven’t tried any opioids for the pain. I’m afraid to because if it diminishes my pain, I will become dependent on it, build up a tolerance and need an even stronger dose. Like a viscous cycle. I’m sorry you are all suffering too.
Freedom I feel your pain. I am right with you. Fighting to get through every day in pain, and it doesn’t stop, and seemingly everything I used to do before my diagnosis and the injury that worsened my fibro will increase the pain. I grieve the loss of my life before this, and it sucks. How can we not get depressed and anxious when this battle is our life every day and people can’t see it so they think nothing’s wrong, or don’t know about it and say things that make it worse out of either trying to help or not knowing anything about it? And the doctors can be frustrating as they want a positive test or something they can do a surgery on or whatever before they believe there’s an illness. It is so hard to deal with an invisible illness.