Old 06-03-2017, 04:39 PM #1 (permalink)
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Unhappy Feeling low and pretty lonely

Hi guys,

It's been a while since I've posted on here. Since my last flare I've been doing alright, I've had my good and bad days but on a whole have been doing a lot better than I was doing. Half term week this week, so have had a week off of work, and weirdly this is where I think I have now gone into another flare. Have barely been able to move the last few days and spent most of last night crying in agony. It's so frustrating, because I have quite a physical job and thought that if I was going to struggle or have another flare up, that it would not be towards the end of my week off- where I haven't really done that much!
I'm so frustrated and it's insane how low you can get so quickly when you are in so much pain and such high intensity for a period of time. I feel so alone, I have tried talking to my mum about it and letting her know how I am feeling, but then the only replies I got back is how much pain she is in and how rubbish she is feeling- I didn't even get an acknowledgment back about anything I had said, and I know there is nothing she can do, but when you feel like this, sometimes it is just nice for someone to listen and to say - it's gonna be ok.
This may come across as majorly insensitive, but did anyone else find that once they were diagnosed or were going through the motions of getting a fibro diagnosis that members of their family or close friends also started talking about them thinking they have fibro too? I am really struggling with my mum at the moment, because she has never ever mentioned anything to do with fibro or any symptoms of fibro before, then as soon as the doctors started talking about fibro with me, all of a sudden she is convinced she has it to, even though the things she is now saying she has (only after reading things I have sent her) have only come out since I spoke with her about my fibro. The first thing she said to me when I spoke to her about the doctor saying he is certain that is what I have is 'Oh I think I have that too'
I want to be supportive of her, but she has always had issues with attention and drama (that she loves it) and it just seems so coincidential that all of a sudden she has fibro too? If she does have it, fine, but its so hard that at this difficult time in my diagnosis when I am coming to terms with things and I am genuinely struggling that now any time I speak to her its all about her and how she has given herself a diagnosis of fibro. I find it hard because sometimes it is literally like she repeats things that I have said word for word - having never mentioned any of it before??
Did anyone else experience this at all?
Sorry, I know this is a massively awful rant, but after weeks of feeling worse and worse and then the last few days of sheer agony and lowness, it's just the last straw for me at the moment. The only way I could describe to my friend how I feel, after having to cancel plans with them today, is that it feels like I have done the most intense workout at the gym, pulled every muscle in my body, whilst feeling achy and awful like I have the flu, with the added joys of spasms and cramps as well as AWFUL fatigue!
Sorry again, for my ranting about nonsense but thank you for listening(reading)

Gentle hugs xoxo
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Old 06-07-2017, 03:41 AM #2 (permalink)
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Default Re: Feeling low and pretty lonely

Do not worry, you are not alone. I also have felt the same way - exactly like you mentioned, angry at the people, frustrated, then angry at myself for getting angry at them, for being mean etc.

I really try to have respect for everyone with pain, pain is pain......However, I also have my limits. I was only 33 when I started having very serious fibro related pain all over. I was in the middle of building my career, looking forward to a relationship, kids etc. I had to give all of those up due to fibro. I cannot work, even get out of the house, and I am only 39. And as if my physical/mental state are not bad enough, I also have to worry intensely about money because I can't get disability in the country I live in (fibro and even most mental illnesses are not seen as disabilities). Many people around me, including my mother and her friends who are 65+, do not have to work to have money to buy their food, have a roof over their head. They either have their pension and/or are married so they have a spouse who takes care of them. And I feel for them that they have pain, or fatigue. I do....but on the other hand, the fact that they are experiencing it now in their late 60's and not in their 30's....and that they come to me with complaints, and the usual 'oh I have that too', well, I can't help but feel angry. Because it makes me very sad as well. It reminds me of what I lost and how hard I have to fight.

And then you also have the drama queens - one of my mom's friends is one. It is unbelievable - every doctor visit, blood test, every single update is HUGE news and has to shared with everyone. I am a very private person, so I don't get the whole 'sharing with everyone' either. But seeing how drama queens often do get a lot of empathy from the people around me makes me frustrated as well. Is that really the way to get some empathy, some understanding? I am not sure..... being a drama queen is so not me. I suppose it is so for many fibro sufferers.

My advice...gosh, I wish I had one. Just letting these comments go, not dwell on them, walk away when you start to realize it is beginning to annoy you. We can never change these people. Maybe we can try to communicate better with them, even though that takes a lot of time and energy. But it is your mother, so it is worth the effort.
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Old 06-09-2017, 02:04 AM #3 (permalink)
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Default Re: Feeling low and pretty lonely

Oh man, yes I understand exactly what you mean. Sometime i even get nauseous when I had to explain what I have to other people , and then their replied was " I think I might have fibromyalgia too!!" What is this a party illness??? The golden explanations to all pain relate problems? Maybe it's good that the more people know about fibro the better medical treatment would be more possible for us the real sufferer , but now with the social media it's became like a diva deceased. I've seen people used the excuse of the possibly self diagnosed fibro to get away with bad behavior. I'm so glad I'm divorced cause I knew if I was still married to my ex-husband he would pull the same stunt too, and it would have to be me who have to babysit his fake conditions. Meanwhile all those people just casting me aside and branded my conditions as simply the same as their feeling towards their fake fibro pains. I often imagining pushing them all in to the swimming pool and toss in a plugged in appliances like hair drier or a toaster for a few seconds in each minute and he how they would react. It's just my imagination running away with me, there's no crime in that doesn't?
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Old 06-11-2017, 08:25 AM #4 (permalink)
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Default Re: Feeling low and pretty lonely

I'm so glad there are other people that understand. It's exactly that, I feel guilty for being angry and annoyed at other people who just decide they have fibro because they've got a few aches or pains, not really understanding what we have to go through on a daily basis and the things we have to come to terms with and deal with.
I feel bad because it's my mum, and I want to support her, but at the same time, it's just funny because she's only decided she has fibro, since the docs have spoken about it with me! Just funny timing!
It's hard when we fight such a real battle every day, and then people seem to trivialise it, but saying they have it too, over something silly like they have a headache, or they get achy legs or have a sore back. Yes it's not nice that they have those things, but to me, it's insensitive to just automatically go 'oh I have fibro' to someone who is genuinely struggling with it. I tried explaining to my mum that this has changed my life and hit me like a sledge hammer, and there's so much I have to come to terms with now, and I would never ever wish for this illness! And if I could change it, I would! I wouldn't be sitting there almost wanting to have it, for the attention or to be used as an excuse or for drama like I've seen some people do!
It is so hard, and I wish more people understood what it genuinely was like. And it's that invisible illness type thing, because people can't see it, it's not taken seriously sometimes. You wouldn't turn to someone with a broken bone or something else you could physically see, whilst they were talking to you, and because you've got something going on with you mildly related, decide you must have a broken bone too?

It definitely doesn't count if you just think about throwing people in the pool 😜
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Old 06-11-2017, 02:57 PM #5 (permalink)
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Default Re: Feeling low and pretty lonely

There are too many people out there that's following the new fad the trends of illnesses. Apparently other illnesses are either real death consequences or just too ugly to imitate. While fibromyalgia just look like a good way to get pamper. It's must be one of those people that they called the Münchausen syndrome. Cause one of the things I notice is that most real fibro sufferer never ever thought for one second before their diagnosed that it would turned out to be fibromyalgia to begin with. Simply because all the signs of having fibro are far too much like other deadly illnesses out there so we mostly too freaked out about dying in some horrible death , as soon as our doctor diagnosed us with fibro it was like " oh?". Sure I'm glad I'm not gonna die but in my head was like really?... all that pains and horrors I went through just for this??.. I don't even know if i was shock or disappointed, not because I want deadly illnesses I guess I was just piss off.

So if anyone out there think that they just might have fibro, I'm confidence to bet on money that they don't.
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Old 06-11-2017, 06:12 PM #6 (permalink)
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Default Re: Feeling low and pretty lonely

Many people want to get attention.
I don't let what that kind of person says bother me.

My attitude is that I know what I know. I know my body and I know who I am, I know who I have been in my life, and I know what has changed. I know what I feel and go through each day. No one else does.

So, if someone wants to think they know, or tell me they have the same thing when it is obvious that they don't, or wants to tell me that I don't have the experience that I have, I just close my mind to them.
I don't care what anyone thinks or believes about me.
Their belief or disbelief has no effect whatsoever on the truth.
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