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

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

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Yes, can definitely relate to this. I used to be able to toss 20kg bags of sheep feed around as easy as anything not now.  I feel I right weakling.

Now seeing someone to help me with diet and gentle exercise to include some gentle weights to try and stop the decline and give me back some of what I have lost.  Early days for me but I feel if I do nothing I can't expect it to get any better.

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Hi Valerie, I believe this is true, I've always been very active and fit but since a very large flare up last year my muscle tone has declined rapidly leaving weak arms and legs, my skin texture has changed also, I've tried to do more in my daily routine but find it hard as I still work full time, but next week I've planed to do water aerobics next week with a friend who also needs encouraging,

I'm a big believer use it or loose it,

It's not easy but every little exercise will help.

Gentle hugs Leona

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Thanks Maggers, so I not going crazy !!! Anyway, had a neck & shoulder in December 2006 & from there issues started popping up. My skin also has changed, its as thou I have goosebumps on my arm & top of my quads, plus get chills but don't last long. I exercise as best I can ( it makes my stiffness & body feel better), but I get so exhausted...Are all things things connected. I did read a trauma injury may bring it on.

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Hi Valerie. How old are you if I may ask? If fibro slow you down then It's most probably the result of not exercising? sedentary lifestyle?

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Hi Leona18728:

Thanks for your reply & that I AM NOT CRAZY !! Yes...me too, I am trying to keep an exercise routine, but sometimes its just so darrn hard. My drs All tell me exercise will keep the pain down, but my muscles arent looking good yet I work them. UGH its so frustrating !!!

Thanks so much for responsing.

Smiles & Giggles

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Hi Teresa:

I am 55, but been extremely hiper & active all my life. This fibro & UDCT has gotten me Bummed...All my drs have stressed to keep up my exercises & walking, but somedays ate much harder cause of our weather changes...That Really Effects me!! How is it for you, I mean activity challenges/ weather, etc??

Thanks so much for your reply.

Smiles & Giggles,

Valerie826

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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.   x

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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...

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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

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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

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Hi Valerie.

I'm sure that what you describe has more to do with the connective tissue disorder. Are you taking anything for that? Collagen/gelatin?

I found an online vd "How to Hydrate Your Connective Tissues - Yoga Talk Show" that' a podcast interview with Connective Tissue Yoga therapist  Sue Hitzmann that created a method called the "Melt Method" (can't post the link here but you can find it easily). 

As far as I'm concerned, i suffer most with weather extremes. I'm in Portugal and it's hard on any extremes.

Take care. X

 

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Hi TeresaJS:

Thanks so much for your reply & that Awesome information. I am going to check it out. And no don't take any collagen nor do I know how much or what kind to look for...Help?? Any suggestions would be extremely appreciated.

Thanks bunches,

Valerie826

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Hi Valerie.

I'm assuming that connective tissue dysfunction implies collagen deficiency. It's logical but I’m not sure about that. It would need some research or simply asking the doctor.

I’m assuming you’re not vegan. If you are this doesn’t apply.

Collagen is present in animal gelatines. Both four legged animals (the standard one we use for cooking or supplementing)  or fish derived which is usually made from fish skin. I like the latter very much: it’s good for skin, bones, all over. Any of them can be found over the counter in health shops as a supplement. Just try it a see how you feel.

Take good care of yourself.

XXX

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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..... x

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Hi TeresaJS;

Thanks do much, No not a vegan, but not a big meat eater, never have been. But any suggestions for the cooking oil or supplement...What one do you use?

Thanks again for your response & information.

Enjoy your weekend,

Valerie826

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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

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Hi Valerie. 

Thank God they all come in capsules! 

I'm not in the UK at the moment but the following (better, I would say, if combined: 2 fish collagen + 1-2 type II chicken collagen) I believe would do.

It might give you nice glowy "face lift" - you let us know if that's the case!

Ultra Hydrolyzed Fish Collagen Type 1 (skin firmness)Glucosamine & Collagen Type II (joints, etc)

I can't post the links here but you'll find them for sure. 

Take care sweetie. X Teresa.

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This didn't came out very clear. So, two supplements:

 Ultra Hydrolyzed Fish Collagen Type 1 (skin firmness)

Glucosamine & Collagen Type II (joints, etc)

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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