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Muscle weakness, fatigue, and nothing helps
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Jointless posted:
Hi everyone,

I'm feeling so very stressed about my lack of options. But firstly I want to ask, do you get muscle weakness and fatigue so bad that you find yourself falling over and unable to carry/hold things? What aids have you found useful? I have a walking stick but when it's really bad the stick wobbles everywhere cos my arms aren't up to par. Thinking about maybe a four-pronged walking stick but was curious as to what you all use?

I have recently tried seeing a physiotherapist to get a exercise routine started to try to improve my muscle strength and fitness. What a waste of money! The very gentle exercises she gave me made me so bad. I went back to tell her that and by the end of the physio session I was almost unable to walk at all. So next I'll be trying an exercise physiologist but am beginning to wonder if there is any hope at all.
The Cymbalta (90mg) is basically doing nothing. All it is helping is my psychological problems. I want to get back into some of the things i used to do. I'm in Australia and there are really no fibromyalgia specialists. My doctor I'm seeing seems to know less than me about the condition, and I don't know anything about treating it except that exercise may help. So far all attempts at exercise have been a failure.

I don't know what to do and noone understands. I have a young daughter and I'm really struggling to care for her too. I feel like crying cos of the pain. I find myself resenting my daughter when she is crying for me and it hurts so bad. I love my daughter, and when she stops crying those feelings instantly disappear but I hate feeling that way at all. I never let my pain stop me from giving my daughter the care she needs but as such, I suffer a lot for it. We can't afford for her to go into daycare.

sorry for the whinge and thanks for listening. any advice is most welcome

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Do you get muscle weakness and fatigue that prevents you from standing, walking or holding things?
  • No, only pain stops me.
  • A little. I can still stand (etc.) but i feel really weak.
  • Yes. I fall over and drop things when it's really bad
  • Yes. Some days I can't leave the bed
  • Nothing stops me - I feel great
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Dollbug responded:
Hello and welcome.....the wrath of the dragon really STINKS...as it is a mean and ugly illness to deal with....but I am sure that you will find something that will help you cope better....MiMi in NC....

I hope that you will ask your doctor to check your Vitamin D level....which is so important for a lot of people....low Vitamin D can cause additional pain and it can also affect other illnesses as well....

I urge you to get up and move......move and move some more...do NOT give in to this illness and stay in bed....not a good thing for the mind or the body....even if you have to move slowly....we do have to be careful....but you can do some gently stretching....and gentle exercises....as we do not want to cross our line....so to speak...

The chronic fatigue is something that I have not been able to
control....I still try different things and I am still hoping that I will find something that will also help this....

Sleep is so important for us FMers also....we must get enough sleep....and we must also eat right....

I hope that you will read the info under "tips" and "resources" to the right of this page....there is really some good info there...and you might also find some things to try that will help you cope better....

There are no quick fixes though....that I have been able to find...anything you try will take time and effort....you should try something for at least 6-8 weeks before deciding it what you are doing is truly helping you.....as it takes this long to really help you feel a difference....

I hope that things will get better for you soon....but you must hang in there...and keep on keeping on....until you find something that helps you....have you tried using a heating pad, Stopain Spray....or taking vitamins and supplements....

I am one of the FMers here who has learned how to "control my FM pain" by taking vitamins and supplements and doing other things as well.....and this works for me....I tried different medicines but was unable to find anything that really helped me without causing side effects....

I take magnesium and malate combination supplement, Omegas, Super B Complex, Calcium and Vitamin D....plus others...but these are the ones which help my FM pain the most....

I hope that you will feel better soon.....

Take care and good luck....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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emeh19 responded:
I am sorry this is happening to you, all while trying to raise someone else.
Sadly, I do find myself dropping things often, and the stiffness and pain in my knees prevent me from picking the dropped items back up...so...there's usually a lot of misfit items on the floor.
Cymbalta did NOTHING for me except made me happy, I agree with you. Also celexa was ineffectual.
Can you get an excercise bike and just go slow? I like to do that while watching TV or doing something else.
You may look into alternative treatments like massage and reiki. Tai Chi could be a gentle exercise you could use.
 
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NeNe_11 responded:
Jointless...Im so sorry for your pain & the difficulty you are having taking care of your daughter. Im glad you have found this site & hope you find it to be as helpful as I have.

I hope you will continue to try to exercise, as it is very important for those with fibro to stay somewhat active. Have you tried just stretching to start? You can find fibro stretches on the internet as well as on the Resource tab to the right of the page. Maybe once you have gained some flexibility, you will be able to take short walks without falling or losing your balance.

I know it is easier said than done when you are dealing with the pain, weakness, exhaustion & mental fog of fibro, but as you already know, it will benefit you both short & long term.

Good luck & feel better!
Denise
 
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Jointless replied to NeNe_11's response:
Thanks everyone.

I have been taking vitamin D for almost 2 years now. I do take a multi vitamin also.

As for the exercise, I have been very inactive over the last 2 years due to pain and not being able to find a suitable form of exercise that didn't leave me feeling worse. That is my current battle - working out how to get some sort of exercise without worsening my symptoms.

I decided to do just as Denise recommended. I did some gentle stretches yesterday but none of the muscle strengthening exercises that the physio gave me. I was so sore when I went to bed that I couldn't get to sleep (and that says something for me). I ended up sleeping with my head at the foot end (for some reason I hurt less around that way?). This morning I am feeling significantly improved (though far from perfect) which is a huge different to how the previous exercise routine left me. I will keep doing the gentle stretches and will see an exercise physiologist to help me manage the whole thing.

Thanks for your support ladies. It's not easy.

Will take a look at those resources. thanks
 
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MichMegT2011 responded:
Dear Jointless,

I have severe Fibro and 2 small children. I know EXACLTY what you mean. On my really bad days I try to have the kids play quiet activities or watch videos and I lay on the couch wrapped in a blanket. For the pain, I found that food effects the pain such as chocolate, sugar, anything acidic like tomatoes, t-sauce, green, yellow and red peppers, oranges and so on. I am also on Cymbalta. Some days are better than others. I also take a natural muscle relaxer for stress and the pain. It is called Formula 303. It is all natural but since it has Valerian root in it, it does make you drowsy. I do a soft yoga program DVD thru the Gaiam company every other day. It gives me the strength and endurance I need. Try to drink lots of water too. I still have fatigue issues and pick only one major thing or chore to do a day. Remember to be kind to yourself. Cuddle with your daughter a lot. Maybe if she is old enough u can color together too or blow bubbles.
I hope this helps as I too have swore and cried many times when I can barely move and get out of bed.
Hugs to you.
 
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Iwillfeelgood replied to Jointless's response:
Hi Jointless. Just say your blog. Hope your see this. I suffer from weakness and drop things and am generally clumsy. I do still have good mobility. Not sure what a physiologist is, but the problem with trainers is they don't understand FM and how debilitating a normal exercise routine can be. The best place to start is with stretching. That alone will make you feel better. It will loosen up your muscles and get your body fluids flowing which will get rid of some of the trash built up in youir body. Since you are very weak, develop an exercise plan of floor or chair exercises. There are some really good books out there. A lot of books for people over 50. Don't know your age, but these exercises would work for you. Start off just getting into the position and performing 1 rep of each exercise you choose. As you get stronger, take short walks in the sunshine. It's great for getting your vitamin D. I went to a yoga class, but it was too much for me. The instructer suggested just doing the floor positions and stretching, which I now do at home, but for no more than 15 minutes. I do use yoga for my Get on a very clean eating plan. Look at some articles on foods to eliminate if you have FM and develop a plan that works for you. Drink plenty of water. I personally reacted badly to Vitamin D and can only take it in very low doses. I rest better when my upper body is elevated. If I'm feeling really bad, I sleep sitting up on the couch. Staying immobile for long periods of time makes the pain and stiffness much worse.

With your little girl, do as little lifting as possible. When she wants a hug, let her crawl in your lap. I have 5 grandaughters 1 year to 8. I spend a lot of time with them. Minimize "induced chores". Cooking - as little as possible. Use disposable dishes. This eliminates the fatiguing periods of cooking and cleaning up. More time for the baby. A peanut butter or cheese sandwich with fruit fresh veggies and milk is a perfectly nourshing meal. Have snuggle time where you snuggle up together and read to her. Most of all for her, be happy. Find your inner peace in this madness through prayer or meditation, support groups, find a happy undemanding friend to lift your spirits. Kids are happy when their parents are happy. Explain to her you illness, that it is not fatal, just makes you feel bad and certain things make you feel worse so you have to do things a different way. Have picnics in the yard. Sing together. Happy fun songs. Have movie time and eat popcorn. And when you get to feeling bad, tell her you need a time out to lay down and rest. When I'm active, cleaning or playing I do 20 minutes of activity and 20 minutes of rest. Learn your limits and learn to leave things undone. This is my policy Dirt will be here when we are dead and gone, in fact, we will be dirt. So, I'm not going to worry about eradicating all dirt from my life. My body lets me know when I have reached my limit, I get very clumsy. I stop and curl up with the kids. Be very organized so you don't have so much to do. When you take off your shoes, put them right in the closet, dirt clothes in the hamper. Teach your daughter to do the same thing. Supervise her when she takes off her shoes make sure she puts them where they go, etc. Play with one toy at a time, put it back when you want another. I know from experience that walking into a really clean room, automatically raises my spirits. It actually physically raises your seratonin levels according to an article I read. Blessings from woman to woman.
 
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LavenderPrincess responded:
Welcome to the Group!

I would suggest you have your doctor refer you to a lab to check out your levels of Vit. B12, Vit. D, and get a full iron panel. The doc. should also look at your thyroid numbers.

~T.
 
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Jointless replied to LavenderPrincess's response:
Hi Everyone. Thanks for your responses.

First of all I should mention that my daughter has just turned 5 months old. As such, she can not crawl, draw nor needs me to explain anything to her. She must be lifted, carried. At this age, she is very physically demanding.

As for exercise, since starting this post i have gone to see the exercise physiologist. This is someone who is specifically trained in using exercise to aid in treatment of chronic health conditions (and injuries) such as fibromyalgia. He seemed to understand it quite well (to my surprise) and I've been doing much better since. I have also started taking a cocktail of vitamins and supps. My symptoms have now greatly improved.

I did just read an article about avoiding certain foods so I will give that a try. Not looking forward to it cos they want me to cut out all the good stuff! lol.

LP - I've had all those checked. I take a vit D supp as that was low but the rest are in tip-top shape :)

IWFG - I know what you mean about a tidy room. We tidied the house for guests on the weekend and I have been able to keep it tidy since. It's such a nice change. Previously, I was too bad to put things away after me, leaving it to my husband who is barely home due to work. Now, thanks to the EP, exercise and vitamins, I can maintain the tidiness. I really am amazed at the difference a proper exercise routine and some supps can do. hopefully the diet will help too though I'm secretly hoping it doesn't so I can eat all those yummy things ;) lol.

Thanks for your help and input ladies. Btw - I'm 26yo in case your wondering. Am hoping that if I can get on top of my fibro, I will be able to have more children but at this stage, one is the maximum i can handle.

bye for now
 
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wendogal responded:
Welcome.....glad u found us for support. So sorry things are so difficult now. I can totally relate to the weakness and fatigue. I have a walker I used when the weakness prevented me from walking. I am letting it collect dust for now - thankfully. But it is very helpful and steady. I spend days in bed very often though. If I over-do, I need to recoop for a day or two.

I use aqua therapy which is the best. The heated water is soothing and the exercises are much easier in the water. My range of motion has greatly improved and my pain decreased.

Heating pads are the best for me. I have one everywhere - even the car.

Best of luck and praying for some relief for you.
Gentle hugs, support and inspiration!!!! May we all walk with our guardian Angels keeping us Safe. God bless America, God bless us all. Wendy
 
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BelPwnt responded:
Motherhood is fraught with many guilt pitfalls, but none of them have hit me as hard as FM. I have three kids who were 8, 10, and 12 when I was diagnosed, but, as is the case for most of us, I'd been broadsided by FM long before the diagnosis. I've been a stay at home mom all of my kids' lives. I knew myself as an active PTA member, a woman who loved to sing and bake cookies, took her kids on nature walks, did arts and crafts using toilet paper rolls and empty egg cartons... and still I didn't feel I did enough for or with my kids. Looking back now, as I sit in "my spot" after having my husband get my handful of morning medicine, I'd like to shake my former-self and tell her to relax and enjoy everything she took for granted.

Parenthood is hard, parenting with FM can seem impossible, but it's really not. It requires pairing down, coming back to basic truths, and no longer comparing yourself or your family with the inevitable Joneses. You love your daughter, you keep her safe, and she knows that with you she is loved and safe. That's enough, I know it doesn't sound like it is, but trust me, it really is.

I took my family to a family counselor soon after my diagnosis. We could only afford a few sessions, but they helped all of us a great deal. Sometimes my now 15yr old daughter bursts into tears and wishes I could do things with her I can't, and, yes, that hurts, but at the end of the day I can cuddle her on the couch and she tells me everything about her life through shared smiles and giggles. I've come to learn just being able to be there for her is an amazing gift.

I've slowed down so much and that's allowed me to appreciate my kids in a way I couldn't have before. I get a lot of quiet time with them, they tell me everything (sometimes more than Mom really wanted to know!)...and, as odd as this sounds, without FM I don't think I'd have this.

Yeah, ok, my kids aren't in any extracurricular anything, but unlike most of their friends, they have a mom who's always there, predictably in one spot in the house. Their friends have started trickling into our house, and I've gained a reputation as "the mom that can be talked to" with the teenagers...which I think is pretty cool.

Before all of this I spent a lot of time in a wheelchair thanks to a genetic spinal condition, so I guess I already knew on some level that motherhood can be done regardless of limitation.

I've babbled enough :) If you can talk to a counselor you trust, I highly recommend it. The only big thing I'd suggest is to never let your little one take care of you, my kids hear this a lot: "You don't get to take care of me, I'm the mommy. You can, however, help me out from time to time."

Hang in there, you're not a lone, and it is possible to still be a good mom ...even with active debilitating FM.
 
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BelPwnt replied to Jointless's response:
I just read down enough to see how old your daughter is. When my youngest was that age I was in a wheelchair full time and unable to lift him out of a crib or any of that. We set up a side-car bed against ours. I could roll from our bed, into my chair, use a grabber (one of those long sick thingies with a trigger on one end and pinchers on the other) to unlock the wheels of the side-car bed, roll it back, and use the sheet under my son to move him towards me and into my arms. The grabber is a necessity, spit out pacifiers can be easily and quickly retrieved! ;)

I carried my little guy in a sling most of the time, which mostly left my hands free to care for my then 4 and 2 year old kids. Disposable dishes, a changing "table" set up on the couch, designated shelves full of healthy snacks for the older 2 in the fridge, baby gates, and no longer caring about what my house looked like made my life possible.

I hope this helps a bit. There are disabled mothering groups in some towns. I ended up lucking out when one of my husband's coworkers suggested his wife, who was almost totally blind, and I could watch our toddlers together. That turned into an 11 year (so far) friendship which has seen me through some very difficult points in parenting.

I'll keep you in my prayers.

~J
 
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mymyrt replied to Dollbug's response:
MiMi, I envy the fact that you can still get out of bed and move, move, move. Some of us aren't as fortunate. I also suffer with cfs, which makes the days I can get up almost as bad as those when I cannot. I suffer so much guilt because I can't do much of anything and live with the depression, the guilt, the stress, the pain, the fatigue, and then the vicious circle starts again. I saw where someone mentioned Soma. Is it a muscle relaxer? My pcp says it's not a good thing to use, but then he really doesn't care, he says it's my disease. I have not had any muscle relaxers, but if it works for some of you, I'd really like to hear from you. Don't know where you are in NC, but I am so ready for warmer temps, level barometric pressure, and good weather. Your tips and advice are always so informative and caring, so I hope you won't feel I'm being ungracious. You're lucky, and I envy you.
 
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xperky replied to mymyrt's response:
mymyrt - Soma, or the generic version Carisoprodol, works wonders for my stiff muscles. Yes, it is a muscle relaxer. It causes drowsiness, so I only take it at night. Usually 1/2 pill is plenty also. It can be addictive over time, so doctors hesitate to rx it. My bottle lasts many months because I only take it when I can't sleep due to stiff muscle pain, and when the tramadol isn't enough. I tried flexeril but had palpitations from it, so carisoprodol is better for my body. In your case mymyrt, since you have cfs, I'd be careful about the drowsiness it causes! That may linger into the day for you.

We all have to weigh the benefits against the detrements of our medicines. It's a lot to keep up with! I hope you have an energenic day mymyrt!

Margaret
 
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Jointless replied to xperky's response:
i like to use melatonin - a natural muscle relaxer with no hang over the next day! i was surprised with it's effects. highly recommend them.

thanks belpwnt. i'm so amazed with what you managed. My little one is currently telling me that this is not an interesting way to spend her time (by wriggling everywhere!) so I'd better go nut thanks again


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