Can anyone else relate?

Posted , 10 users are following.

Having Fibromyalgia an invisible illness. Previous to my current doctor (who is a wonderful and understanding individual in the medical profession) I was poked, scanned and evaluated with no answers. I had one doctor in the past who in one appointment asked me everything from if I booze drank excessively to if I drank water in a undeveloped country. Needless to say I was not very confident for a very long time I would have answers. Fast forward to now: With medication, exercise, massage etc etc etc I get by day to day. Living with an invisible and chronic illness no one understands. My soon to be former employer pokes fun at how I walk. He says that I walk with a waddle just like a duck. My hips are consistently bad and stiff. My former partner and I were together three years and he had no understanding which had a great part of why we are no longer together. I recently started dating again and after finding the nicest sweetest guy who I thought we had a real connection. I understand that he was trying to help but everyday he had a suggestion of things I should try (have you taken an advil for your chronic migraines, or had your eyes checked). It ended up splitting us apart he wanted to fix me and it just doesn’t work that way. Since breaking up we have talked I found an article on spoon theory and how it relates to chronic illness and I do think it helped him have a new view on my condition. This is my life I wake up with fibro live my day with fibro and go to bed with it. Some days are better some days are worse. I've lost a lot of people in my life simply because I cant take off my condition, I cant control it and I cannot make it go away.

Thank you for reading ... wonder if anyone else feels this way or experiences this  

2 likes, 9 replies

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9 Replies

  • Posted

    I am sorry to hear you mate wasn't supportive the way we need them to be. Mine is great. You are right we live walk and breath fibro it's who we are. I have lost most of my friends too plus my job. I know it's hard. I have found just talking to people who understand and know what we are going through helps alot.

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  • Posted

    yes I get where your coming from it,s the same for me i can go out waling sort ok ok then within 10 mins. be nearly crawling on all fours ,the pain hits anywhere it wants to and can vary from 5 0n a scale of 1 to 10 or be 9 all within mins. i get everything from stabbing pains to crushing then really heavy legs arms ect. and for some reason my left sides worse than my right . And it makes me so mad at my own body as it used to work ok. this has ruined my life in more ways than one please please please do more research on this medical profesionals . 
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  • Posted

    Oh yes! You aren't alone! I call my fibromyalgia the dark passenger, always there,lurking, waiting to ruin any plans! Hang in there, we are here for you!

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  • Posted

    I have MS my ex thought he could 'bulky' me better. Thank you for reminding me to revisit my counsellor roots.

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  • Posted

    I can totally relate, I too had to undergo many test and evaluations before finally getting a diagnosis. At first family didn't understand that I was constantly in pain all day everyday, I just got to a point where I stopped saying owe or I hurt felt like everyone was tired of hearing it, so I really just started keeping to my self. Then one day my boyfriend started looking up different things about the illiness because I am always trying to learn more about it, now he helps me by getting me a heating pad when I'm not feeling well and assisting me with daily things around the house, my lifting and cutting skills are not the best anymore. 😔But I am thankful even my 9 year old daughter tries to help.

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  • Posted

    Yes I do. I've been following these forums and it's helped me heaps and I'm hoping some others can also learn a bit from me. I'm no expert but just telling how it is for me and what has worked etc.

    Just tick the boxes to follow discussions that you read, you'll soon learn from others. Getting involved is good for all of us. No-one knows what it's like but us who live with it.

    I'd like to believe that we can personally learn how to reduce the number and strength of our flares but learning what is triggering our flares whether it is weather, thoughts, fears, memories, emotions, stress, anxiety, depression...we probably have most of them...that come and go and there are many different things we can do to reduce these.

    Focus, simplify, build your own support groups, surround yourself with all the things that promote happy memories, helping others when we can but minimizing stress-I just take it one day at a time when I can-gives me more time to plan, relax and I'm constantly reassessing what really needs to be done and what isn't necessary.

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  • Posted

    I do. My arms and legs feel like there growing all the time sometimes it hurts more then others .
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    • Posted

      I been having this particular feeling all over my body just lately, been gradually getting worse over the past four months. I'm pretty sure stress and cold weather has been my main triggers.

      I've been trying to manage and remedy this best I can with and without outside support. My loss of income and being home most of the time on the farm has caused additional strain on our marriage and financial situation. I may have to move out again- haven't as I don't want to be alone.

      I spoke to my rheumatologist last Monday about fibro flares and how through these forums I've learnt that most sufferers of fibro flares are getting good results with cymbalta. He said since I'm commencing Humira for ankylosing Spondyloarthritis as soon as my script arrives, that we must concentrate first on seeing how MY BODY RESPONDS to Humira as this is first priority- then we work on the fibro flares.

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