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is EXTREME muslce weakness a normal part of fibro?

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Posted 12/17/2010 12:14 AM (GMT 0)
Is it typical to have extreme weakness from Fibro?  For me, the weakness is more significant that the pain .. because I am ALWAYS weak, but the pain comes and goes.   My family doctor asked if I thought it was atrophy (from not being very physically active anymore) or if it was something else .. and I'm not sure.  So he wants me to exercise lightly for 6 weeks and see if I get stronger.  So far, things like carrying one load of laundry upstairs leaves me with burning muscles and out of breath.  He said that if I DON'T get stronger with regular increased activity, he's going to order a muscle biopsy to check for various forms of muscular dystrophy!!  yikes!!  that sounds super scary to me (the bx AND the dx!!) 

also, my joints seem very painful.  particularly my hands, knees and feet .. but they are not swollen or red ... and my tests for RA, Lupus, Lymes Disease, Thyroid Disorder and anemia all came back ok. 

(btw .. i just turned 39, I'm 5'11", and weigh about 175.)

 

Posted 12/17/2010 1:07 AM (GMT 0)
I had those symptoms, but I started taking adderall for energy and it seemed to help with that as I got more active. But yes, I do think it is normal for fibromyalgia. A complete feeling of overall exhaustion. I am sure that there are others who have these symptoms. But I think that the doctor is right about light exercise. I feel it is like use it or lose it. Try to keep moving around.

Hugs, Karen
Posted 12/17/2010 1:29 AM (GMT 0)
Hello getting by,
I was diagnosed apx 15yrs ago w/fibro. I had it alot longer that this before I actually had a name put on it. I had severe weakness and fatigue..I got me a Nordic 2 station gym at my resd. I was able to work out apx.3 mths until I got weaker and weaker. After this episode I have stayed weak to the point of not being able to do normal activities..It felt like by knuckles were dragging the floor.. So YES it is very normal to be weak and fatigue..
I hope the exercise helps. I cant walk much, but when i;m able to it makes me feel better, if for no other reason than acomplishing something.
God Bless you,
barbara
Posted 12/17/2010 2:34 AM (GMT 0)
Off topic, hijacking thread for a second....your last name would start with a G???

Ok back to topic, I have moments of weakness, usually when I'm having a miserable day.
Posted 12/17/2010 2:44 AM (GMT 0)
umm ... do you mean MY name? nope ... it doesn't start with a G. :) in fact, there is no G in my name at all.
Posted 12/17/2010 2:53 AM (GMT 0)
Sorry, I meant to Barbo, should have made that clear. Sorry
Posted 12/17/2010 5:47 AM (GMT 0)
That's an interesting question.  I would love to be able to push myself hard enough to find out if the weakness would decrease, but the pain always increases tenfold when I overexert my muscles.    mad    I used to be such a physical person, and boy do I resent it!!  Makes me want to tear my hair out at times - - but that would cause more pain.

Debbie 

Posted 12/17/2010 8:50 AM (GMT 0)
I find I feel weak if I am sedentary.  I need to keep moving and doing things.  Gentle exercise is so good to do...things like walking, swimming, and yoga.  Over exercising will just cause more pain.  So, if I were  you, I'd start walking daily or get a walking-in-place video if you live where it's cold and snowy right now.  Leslie Sansone has some great ones out there!  Pace yourself but keep active in your home.  I take care of all my own housework but I pace myself doing it.  I'm using my muscles and that is a form of exercise, too.  I know if I don't keep going, I'll get so I can't take care of my home and that's not acceptable to me.  

 

All of the above help me keep from becoming weak...and actually it gives me more energy.  I hope these ideas help you.

 

Sherrine 

Posted 12/17/2010 2:58 PM (GMT 0)
when I had my last "flare" I felt so weak that I almost physically couldn't get up and do anything. But I have a full time job so staying in bed was unacceptable. It took me a bit longer to get ready but I did and off to work I went. I am a front line receptionist so I dont have physical work but it is still work and it is 6 days a week. but aside from getting out of bed and having to pace myself, I actually felt better moving around. If I stay in bed I get that "beached whale" feeling and that to me hurts far worse than the ache and fatigue of normal routine activity.
the only thing I dont do because of vertigo is carry laundry or children up and down the stairs, my very supportive hubby does that for me and he also vacuums all the floors.

I am finally coming out of the major flare only to find out that I have some other medical issues I now need to deal with. I don't have all the answers yet but will let you all know when I do.

Keep moving, it really is the best medicine for us fibromites. Don't let it take your life from you.
Posted 12/18/2010 4:40 AM (GMT 0)
When I first got fibromyalgia, I spent almost two years in bed. I could barely walk anymore. I had to hang onto furniture and even got myself a cane. I was aching, but it was more of a physical weakness. I started out really slow. Taking short walks here and there. We would go rock hunting. So I had to bend over a lot to pick up stones, and that would make my back ache, but found out the gentle stretching really does work. I am still not what I was, I don't expect to be because I am older now. But with pacing yourself, and walking as much as you can, I think these things can really help you. Swimming is great. Cross country skiing if you have snow. I want to try snowshoes this year. I don't know if I have the stamina. I was able to go back to work. Though I mentioned adderall before, that is what really changed my life, I still believe that you can gradually start off and eventually you will get stronger. Just keep trying and don't give up. The process could be slow, but it is better than lieing in bed. I can't stay in bed too long in the mornings anymore because my hips start aching so I have to get up.

I hope that you find what is right for you. Each of us learn that nobody is a like and we all have different things that work for us.

Take care,

Hugs, Karen
Posted 10/2/2015 1:29 AM (GMT 0)
I am very grateful for this thread! I have had fibromyalgia since 2008, HOWEVER, just this week it seems out of the no where, I have had extreme muscle weakness, all over! Every time I discuss pain with my doctor, my answer has been, "well that is caused by fibromyalgia" so I haven't made an appointment yet. But writing something, standing, walking is exhausting! I keep pushing myself (in small increments) as usual - if you don't use it, ya lose it, as normal, but this has been a little on the scary side for me. Reading everyone's post on this thread is helpful, knowing I am not the only one to feel alone. The pain level has been at a 10+ as well this week, too.

Reading what Debbie said about being active, very active, that WAS me, in a lifetime long ago, before FMS, I try not to dwell on all the things I "used" to do and refocus on what can I now do (yes it is a sorry substitute, but until there is a cure it is all I know to do)
Posted 10/3/2015 2:07 AM (GMT 0)
Ok when i hear weakness..i immediately want to know if they checked your vit d levels...yes with fibro i can have weakness , but when my vit d got too low it was ten times worse...

Other than checking that, slow and steady with the exercise.. Some with fibro are advised to start with 5 minutes and add a minute every day or two..

I got a new recumbent bike, indoor, and if i push too fast , i have set backs.. So a gradual build up is better with fibro..i do gentle stretching and strengthening exercises daily and add the bike in on my less busy days..
Posted 10/3/2015 10:29 AM (GMT 0)
I've had fibromyalgia for 14 years now. My muscles are fairly weak and partially atrophied. Even though I perform exercises with 3 lb weights every other day, my muscles have never become stronger after all these years. So I'm careful about what I lift otherwise I have to deal with increased overall pain.

Years ago, I went to see a physical therapist who handles clients with sports injuries. I thought he might be helpful because I have a work injury and a car accident injury. This therapist pushed me too hard. He didn't really understand fibromyalgia. I could barely walk afterwards my legs were so weak. I stopped seeing him. His treatment gave me no benefit.

Post Edited (almost medfree) : 10/3/2015 5:55:58 AM (GMT-6)

Posted 10/4/2015 3:24 AM (GMT 0)
hello
I must agree with all the advice on this thread. I too spent my first two years in bed or on the couch. Slowly, I began to tackle household items in small pieces. Often, I could only deal with one per day. After almost three years, I could manage more, but kept it simple. I always put each item away immediately! This allowed me to only have to deal with the bigger items as needed, like laundry. I de-cluttered my belongings which really helped; no more dust catchers. I bought a small apartment dishwasher and a set of pots and pans that practically washed themselves.
I started college. I walked about eight blocks to the college and then back, three or four times a week. My first semester I only took two classes. Then, I went full-time, for the next ten years.
All these things added up to less pain. I also learned what triggered my pain increases during time. Being active, even just a few 15 minute walks a day and doing three simple activities a day in-home, with breaks in-between, is a must. Give yourself a month to build up to this, maybe two.
Like almostmedfree, be careful of PT's. Some understand fibro, but others think that if you just push it, you will magically get soo much better.
Currently, my fibro has increased by 40% and for almost 2 years my activity has been severely limited. My muscles have definitely atrophied due to this. I just got back to a place, with the help of knee brace, where I can get back into the water and walk with stretches for 10 minutes, two times a week. This sounds like nothing, but it is a great start!
I suggest a "warm" pool for fibro syndrome as we tend to react badly to cold.
Best wishes
Posted 10/4/2015 3:36 AM (GMT 0)
Not all pts are the same,

Yes the ones that have you exercise as a treatment , may be too much, but there are pts ..who use gentle manipulative techniques that can really help...

The advice to keep moving is spot on..just start easy and work up..

I am in a rut with a cool front and rain rain rain..its slowed me down but i do stretching and of course housework and laundry daily..

Cannot wait for a warm dry spell...
Posted 10/4/2015 9:54 AM (GMT 0)
Maybe my atrophied, weak muscles came on when my fibromyalgia was in its beginning stages.

I was having a lot of back pain from a work injury. I couldn't exercise, I couldn't be very active… Maybe that was the start for me.
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