Having a rough time right now

Posted , 9 users are following.

Hi. I was diagnosed with fibro about 2 years ago. My doctor gave me gabapentin which quickly stopped working. He said there wasn't much difference between gabapentin and lyrica except price. When the gabapentin very quickly stopped working he just wanted to increase the dose. That didn't work either. The last 5 years have just been a blur of painful confusion. I can still work but barely. I had to give up higher paying jobs for jobs that are harder on my body but that allow me to cancel shifts 6 hour shift in advance without penalty. 

Recently I went to a specialist to see if they had any other options. When all she had to offer was increasing the dose of gabapentin I just broke down sobbing in her office. I tried not to get my hopes up about anyone being able to help but I guess somewhere in there I though she might be able to help. 

I'm currently in a very rough flare. My whole body throbs. My feet hurt to touch the ground. I am irritable and my whole family is paying the price for my illness which I think is the hardest part of fibro. I'm in pain and can hardly take care of myself but I'm also expected to take care of others as well. When my daughter does normal kid stuff like not listen the first time I just start yelling. It isn't fair to any of them. 

The new specialist has ordered lots of test that my diagnosing doc never ordered. To check for muscular distrophy and other serious disorders. I had an MRI yesterday and she's ordered an EMG for my right leg and arm. Now I'm worried that maybe it's something more serious. Not that fibro isn't serious but just that some of the things she is checking for result in paralysis or death. I'm worried and for the first time ever just hoping the diagnosis comes back the same. 

I can hardly get out of bed right now and I have to work tomorrow. I'm not sure how I'm going to make it. But then I feel this way about every day of work, so I try to remind myself that things are bad right now but they will likely calm down in a few weeks and I will be able to do more things like clean and maybe exercise. But I'm severely depressed, I spend most of my time resting just feeling bad about myself for not doing things that need to be done. I constantly find myself trying to convince others that yes I really am in pain and that's why I'm not doing laundry or cleaning. The TV distracts me from being uncomfortable. But I sometimes feel like other people think I'd just rather sit in bed and watch tv than participate in life. If they only knew how much I want my energy back and how much I want to be able to go out with my family without getting uncomfortable and irritable and ruining the whole thing. 

I don't know anyone else with fibro, there is no support system in place for me. So I thought maybe introducing myself and reading posts on this forum might help. It also might be good to hear about different treatment options. So Hi. I'm Alexis and I'm struggling pretty hard right now. But I think most everyone with fibro is struggling. 

1 like, 18 replies

18 Replies

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  • Posted

    Hi, Alexis,

    I am so sorry you are going through this. I know exactly how you feel. Gabapentin didn’t help me at all. I have also been diagnosed with polymyalgia rheumatica (PMR) an autoimmune disease. I take prednisone for PMR but it does not help fibromyalgia at all. So I am on nothing for fibromyalgia. You will have better days. One foot in front of the other one day at a time. I am 72 and wasn’t diagnosed with fibromyalgia until 71 and PMR at 69. Just know those of us who have this are with you and completely understand how much it impacts your life, physical and mental. Best wishes to you. Keep your spirits up as best to can. Linda💕

  • Posted

    Hi, it’s Linda again. Wanted to let you know I was checked for other things too. I had an MRI and it was negative for MS. 💕

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