Old 12-20-2014, 12:43 PM #1
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Unhappy Newly diagnosed

Hello,
I've joined this site as I'm having a difficult time at the moment and don't know what to do next. I was diagnosed in October after struggling for nearly 5 years and a doctor finally listening to me! Even though it was such a fight to get diagnosed and start getting treatment, I'm now struggling to come to terms with it all, my fibro has definitely got worse in the past year, and now it officially has a name, I'm struggling to accept that I'm going to have this forever. I'm not in a good place at the moment, I'm finding it hard to get the right medication working for me and I've had to reduce my hours at work so I'm just working 6 hours a day, but I'm still in pain everyday and most days I feel so overwhelmed by it all. I'm not managing to get the housework done and I feel like I'm failing in every aspect of my life. My family don't really understand and I'm quite good at hiding my pain infront of others so tend to put on an act until I get home and collapse. I've stopped going out and socialising much at the moment because I don't have energy for it, but I don't know how to stop putting on this front of coping, at work, if I'm having a bad pain day, they all just think I'm being miserable instead of realising that I'm faking it most of the time! I try to talk about it to my husband and a few close friends, but I find it hard to explain my feelings. My husband can't see why I'm getting so upset about it when I've struggled for years and years when now I've started getting treatment. I know I need to be positive about it, but I don't see what I've got to be positive about right now. How do you all cope with this illness on a day to day basis? How did you all come to terms with your diagnosis? How do you make others realise that you're not always able to meet their expectations? Any help will be greatly received. Thanks
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Old 12-20-2014, 03:52 PM #2
Corvid Corvid is offline
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Default Re: Newly diagnosed

First, welcome to the forum. I hope you'll be able to find support, a community of listeners who understand, and some good advice.

I know what you mean about faking a smile at work and then collapsing when you get home. I'm a single parent working full-time. My evenings after work are spent on the couch or in bed.

I've had to gradually come to terms with the fact that my house will never be "company ready". "Sanitary" is now my new definition of "a clean house". I've made peace with not being the cook I once was by creating a new family tradition by declaring Fridays "take out pizza day", since by the end of the work week, I usually cannot even walk to the kitchen, much less cook.

I try to find the joy in all the little things now. I can no longer take long walks or do sport like I used to, but from my couch I can enjoy the cuteness of the birds, squirrels, and chipmunks outside my window. Sharing coffee and conversations on the couch with my good friends has never been as special as it is now. I've found a new appreciation of soft sheets, warm blankets, and comfy pajamas. I indulge my senses in these little things, and that helps me deal with the other losses.

I'm not explaining this very well, but basically I now focus on and appreciate the small joys much more, and that helps.
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Old 12-23-2014, 12:30 PM #3
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Default Re: Newly diagnosed

Thanks Corvid, you may have not thought you were explaining yourself very well but I completely get what you're saying! I have started enjoying the smaller things in life and I think that most people aren't thankful or take enjoyment enough in these things! I'm just struggling to accept that I can't do certain things mainly because I'm quite a stubborn person, but again, that's something I didn't realise about myself before I was ill! I just need to accept it all a bit more. I really do admire working full time AND being a single parent. If you ever need someone to offload to I'm here! X
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Old 12-27-2014, 05:26 PM #4
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Default Re: Newly diagnosed

Hi and welcome. First of all stop trying to make people understand something they can't .because it sooo stressful .but that doesn't mean pretend your ok when your not, when your in pain at work just say so. Say look I have something called fibromyalgia , it makes me hurt like a ***** every waking moment of my life ,so pls excuse me if I'm not with it atm.
It takes months and months to get the meds right ,so stop beating yourself up for not being superwoman .pace yourself.im the worse person in the world to say that lol, I can't go to bed without getting through my list of to dos. But I don't work so I take all day to do them.
My OH doesn't understand when I'm in pain. He will say why are u looking like that.the reply is always the same, I'm in pain, I don't try to explain anymore , it more a case of I have to deal with this so suck it up and deal with it to .
Take one day at a time. And this is a really ture an old saying. Tomorrows not here so why live it twice.
Trust yourself ,after a while u will no what u can do and what u can't. U might of had it for five years but believe me when u get a name for it u feel like you never had it before, also if unlike me u have a hubby who can't and will read ,show me the site ,it would help him a lot.
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Old 12-29-2014, 02:31 AM #5
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Default Re: Newly diagnosed

Forbid, I've been suffering for most of my life with this disease and have only just been diagnosed. I have however been mis diagnosed sooooo many times, with a corresponding drug regime which doesn't work. I would feel guilty topping my meds with painkillers to try and keep myself going. Now that a Rheumatologist has told me that I have Fibromyalgia I have allowed myself to feel the pain, give in to the pain and medicate the pain. The pain is always there, sometimes more than others, often getting out of bed in the morning and getting to the hot shower is hard. But I know that the hot water will get my bones, muscles and tissues supple and movable. Life is not what is was, I never look forward to anything too much because often I can't make it , the couch is a much better option. I try to stay positive, I have never been overweight or unfit but when everything is always an effort it's hard not to let the negative thoughts in. Gardening, reading, TV and the computer are my saviours.
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Old 12-29-2014, 12:27 PM #6
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Default Re: Newly diagnosed

What medications are you on?
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Old 12-30-2014, 12:46 PM #7
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Default Re: Newly diagnosed

Thank you all for your comments. I am on amitryptalyine 75mg and Lyrica (pregabalin) which I've just started over the past month, I also take codeine but I'm trying to stop as I worry about dependency issues, I cannot take anti inflammatories due to a pre existing health condition. I'm realising the only thing I can change is my mindset but I'm struggling with that one the most. I'm really glad I have found this site though! I know it sounds crazy but I'm almost scared to show my OH this site, I want to but I'm almost worried that it will open his eyes and scare him, even though he is the most
Loving and giving person I've ever known. I also get what you're saying megc, I've started worrying about letting myself down if I try to commit to events! I'm so glad for Netflix! Xx
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