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I been diagnosed with fibro & my muscle definition just gets worst. Is this normal?

Posted , 6 users are following.

valerie826
valerie826

I been diagnosed w/ fibro & my muscle tone/ definition is declining. Is this normal? Help !!!

0 likes, 27 replies

27 Replies

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  • Bee70
    Bee70 valerie826

    Posted

    Hi Valerie

    You are not alone there. My hands are rather weak in the sense just holding a cup is painful, just as peeling vegetables, to getting dressed.  We take life for granted but something like this makes you realise how lucky we all are, and if you can manage to do the basics that's an achievement in itself.  When both my kids were 18 months old, I couldn't hold them because of my pains....this used to make me feel sad. They are now 17 and 11 and I have come along way since then. Pains still play a large part of my life, but I have made a decision to live my life and not let the fibro control my life.  One day at a time is my motto and to enjoy every part of the day and moment that we have the opportunity for with loved ones.I don't get much support from them as being boys, but I know I can rely on them when I need my"ME" time.

    Stay stress-free and calm and positive and deal with one thing at a time and enjoy it. Take care and gentle hugs to you.  wink x

    • valerie826
      valerie826 Bee70

      Posted

      Afternoon Bee70:

      Thanks bunches for your reply. This fibro & being diagnosed with Undifferentiated Connective Tissue Disorder has Bummed me out. However, All my drs keep reiterating that an exercise routine will keep you note mobile. But like you said, One day at a time !! Its been a Huge adjust, since I have always been high strung & extremely activity...meaning its definitely put a damp on things. But like a soldier, I am marching it off, just somedays are more of a struggle.

      Thanks for reaching out...I need it just like you...You are a blessing to your kids & people that cross your path.

      Smiles & Giggles...

  • bronwyn97278
    bronwyn97278 valerie826

    Posted

    Hi Valerie;  I have read all responses, and can Certainly agree, yes Fibro is a "bummer"...it does take all of our energy/mindfullness to say "I'm not going to let it beat me"...but there are days that I'm afraid it still does beat me....As you have also noticed, yes, we all agree that the weather changes are what set us off, plus any extra stressor....I have noticed that the heat is my worst....any form of heat (from a too hot bath, to the car heater)....and especially the hot summers that we have here in Australia.   As for your increasing muscle weakness, this too, unfortunately, comes with the condition.....I used to be able to lift a 57kg patient on my own....but find now to try and lift a bag of groceries is an effort....but I think that with time, you will learn your capabilities, and try not to push youself, as I have found there is always a rebound...you will have 3-4 days of being worse....as many of us have found....pacing is the way....do what you can, but as soon as your body says "enough", then stop....and continue with the project after you have given your body the time it needs to recover.......hoping you have found this ok?...and keep us informed of your journey...Bron
    • valerie826
      valerie826 bronwyn97278

      Posted

      Hi Bron:

      Thank you so much for your reply. I been feeling alone lately...meaning a wee bit depressed. Anyway, I am trying to come to grips with this, but there times I just seem to get p*ssed!!! But like you said, adjust to what your body can do...I am trying but the weather is a challenge & Hot showers are definitely a No, No for me too!! I am glad I found this forum, because I was feeling alone & extremely defective. Thank you & wishes you all the smiles & giggles from life.

      Valerie826

    • Bee70
      Bee70 valerie826

      Posted

      You are not alone on this forum. Remember you are just as SPECIAL and IMPORTANT as anyone else around you.

      Treat yourself to your own ME time and do things that make you happy, and not keep trying to make others happy all the time. Everyday is a new day, so try to stay calm and positive and enjoy the moments the days bring to you.  If your pains are too much on a particular day, don't stress over them, instead try and focus on things that make you happy and enjoy that moment. If the mind is distracted away from the pains the day feels much better and brighter for you.

      One day at a time and live your life to the fullest.....wink x

    • valerie826
      valerie826 Bee70

      Posted

      Hi Bee70;

      You are so right...I am trying to put the pain & adjust to my life changes with everyday as another day of learning of what my body & mind can do.

      Thanks for letting me vent & help me realize I am not alone...

      Enjoy your weekend. Smiles & Giggles,

      Valerie826

    • bronwyn97278
      bronwyn97278 valerie826

      Posted

      Hi Valerie; am trying to understand what Type of Connective Tissue Disorder do you have, as there are "so" many types (eg Lupus, Sclerodoma/Sjorgen's  etc...including some forms of Arthrites)...I would say that it would depend on which version that you have, would be the causitive factor in some of your symptoms.....for example, if Sjorgen's/Raynauds, these would be the cause of your Cold Fingers/hands/feet/toes ????  Christine, another Forum Contributor would be a good person to ask, as I know that she has commented on her Sjorgen's.....hoping I'm on the Right track ,here?     Bron
    • valerie826
      valerie826 bronwyn97278

      Posted

      Hi Bron:

      I have Undifferentiated Connective tissue, its an offset to Lupus. If I don't keep my stress in check plus other factors, it will turn into gull flown SLE. I had positive ANAs, which the drs thought I may have had MS, due to 10+ brain lesions & deep white lesions, which is Extremely unusual for a person my age. But a lumbar puncture results came back negative ( Thank God), I was stressed out for 3 months for drs to review all my tests.

      Anyway, that's where I am right now, just trying to adjust & maintain. It all is overwhelming causing more exhaustion.

      Thanks so much for asking & letting ask questions, as well ad vent my frustrations.

      Smiled & Giggles,

      Valerie826

    • bronwyn97278
      bronwyn97278 valerie826

      Posted

      Hi Valerie; yes, you are sitting on a Time Bomb,arn't you.....do hope that the SLE doesn't take over....that would be More pains....not just the Fibro, but the Arthritic joints, plus the very low immunity, etc....do take care, and hoping soooo much that this does not eventuate for you.....Bron
  • Casper4081
    Casper4081 valerie826

    Posted

    At my last Dr. Appt I was discussing the issue I am having lately where it seems like everything I get lately (cold, stomach bug that turned into IBS) seems to last 3 months despite taking Echinacea. A light bulb went off in my doc and she brought up a website to show me where a renowned doc in the field who is well respected did a study on lupus/fibromyalgia & things you need to stay away from. I don't remember the docs name but if you Google lupus & Echinacea & look for John's Hopkins you'll find it easily. I was quite surprised at the things that really affect fibromyalgia. One is the Echinacea I was taking to try to heal my cold from he'll faster. I/we believe it actually caused a flare up of my costochondritis as it stresses out an already taxed immune system. It was an eye opener.

    • valerie826
      valerie826 Casper4081

      Posted

      Hi Casper,

      Awesome. Thanks so much will check it out...

      Valerie826

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