Profound weakness

Everyone talks about muscle pain and sure I have that, but no one seems to mention profound weakness and I have plenty of that. I have trouble when I bend over, say to pick something up from the ground, and lifting my body back up again. Actually some times I can’t, for instance I bent overt to get the dishes out of the dishwasher and couldn’t lift the upper half of my body back up again and fell (I couldn’t stop myself) onto the dishwasher door. This happens more as the day progresses, so often at the beginning of the day I can pick an item up from the floor, but by afternoon I can’t. I also have weakness in my upper arms so that I have trouble putting washing on the outside line, and sometimes when I lift an arm above my head it just falls down, indeed once my arm just fell across my eye, and my fingernail cut the sclera and when I looked in the mirror my eye was red with blood. My hands hurt and become weak when I try to hold them over the keyboard that’s why I have an iPad. I visited a neurologist for nearly two years and after lots of tests he told me that I have fibromyalgia, but really as a nurse this feels like a neurological condition to me. Does anyone else have this problem. I would really like to know. barb

Dear Barb,

I am not a nurse or a Dr, but I went through 2 Neurologists, on my second Rheumatologist was diagnosed. Please see a Rheumatologist and rule out autoimmune. I have Psoriatic Arthritis, Secondary Sjogrens and Rayanud's with many other complications, and I can assure you that autoimmune can do this to you. They also keep testing me for MS and SLE because of many symptoms of those that I have, profound weekness can be one. The PsA is Spondylitis and that and the Sjogrens are both systemic diseases, believe me, even with Enbrel, I get the same way you describe. It is absolutely debilitating at times!

Surely as a nurse, you have a handle on your blood sugar, so we won't even discuss this.

There are times when I can

hardly put one foot in front of the other. When hurricane Sandy came through and the barometric pressure plummeted, I just fell apart, I went to bed, could hardly make it to the bathroom.

I would say that after 2 years with this Dr he should have been able to determine a Neurological disorder, so perhaps it is time to give a Rheumy a chance.

Hope this makes sense to you and you can find some health and peace of mind.

Love and hugs,

SK

I had some bad bouts with Vertigo with my last rear-ended car accident, which kicked this all off, and my Chriopractor worked on me, got me through the Vertigo. There are also wrist bands just for this, there are all kinds of them on Amazon.

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Polymyositis This is not meant as a diagnosis, but many of the autoimmune/connective tissue diseases read like this. It just sounds so much like what you describe this is why I recommend the Rheumy!

I guess they can be called this, as they can be used for Sea sickness, but there are special ones just for vertigo.

Hi its suzyq I wash clothes and hang them out sometimes I get them on the line and the pin wont stay and it falls down have to pick it up again and repine. It Im a waitress at an assisted senior citizen home called THE KENSINGTON. There others that are chains we take bread cereal milk jelly juice etc two times a week kitcheneetes. I have to take 3 gallons if skim and 2 percent milk you have to take the cap off and the seal under it I could for the skim but nit for. The 2 percent someone had to do it fir me

SK thank you for your message, I do have diabetes but my blood sugar level is well regulated so not the cause of all this.

Hurricane Sandy must have been a real worth I wondered what an earth I would do if that happened here.

I did try a rheumatoidologist and he just inferred that it was all in my head, but maybe I need to find one that knows what he is doing.

Thank you again. take care Barb

Yes I feel that fibromyalgia can have this effect, but my question really is that few people seem to ever mention them, it can get to the point when I think maybe others don’t have weakness.

yes I have dizziness, if I move suddenly or in an odd position or ask my body to do something that I don’t usually do, it’s a very odd experience.

Thank you so much for your thoughts. arb

Thanks SK I will try, nothing to lose. barb

SK, yes I thought that I might have polymyositis, but my muscle biopsy was negative. I get so frustrated with negative results, at one time I would have taken any diagnosis other than fibromyalgia just to have a legitimate diagnosis, but now it seem that fibromyalgia is more acceptable or maybe the more I find out about it, the more acceptable I find it. Cheers Barb

Barb, I do agree very much with SK about going to a rheumatologist to be checked for autoimmune illnesses. If nothing shows up, I can say that fibro makes me fall sometimes. I've fallen down steps on two occasions because my ankle became weak and just buckled under me. Down I went, into the garden. Good thing it was fall and most of the flowers were gone.

Dizziness also puts me in the situation that you describe. Is it possible that slight dizziness is precipitating the weakness and falls? Or what about side effects from your medications causing the weakness/falls?

It sounds like you may also be overdoing it during the day. Maybe you need to set up some rest periods during the day, or less activities, or less time taken on the activities. I do know that the more I do, the more tired I become, the more I hurt and the more foggy I get and the more wobbly I become. It all goes hand in hand. Maybe finding a new pace for yourself would help some with the weakness.

If there's a certain part of your body that buckles, maybe you could wear a soft brace on that part. For instance, I wear them on my ankles to give them extra support to hopefully not fall again.


Barb, I really do wish you luck with this. Falling is no fun at all. It's frightening and makes you feel helpless at the time it happens.

So true, Barb, so very true! I hope it remains negative even though that puts you back into fibro territory. As far as docs know, fibro causes no injuries to our body (eyeroll, snort.)

Hi SuzyQ, nice to see you back! Being a waitress with fibro must be indescribably hard. I don't know how you do it! Don't you have to carry heavy trays and juice pitchers? And be on your feet all day? And be busy busy busy doing all kinds of physical stuff?

Yes, I know what you mean about dropping things repeatedly. It's so embarrassing. I did it one day while at the supermarket checkout. I was exhausted, explained I needed light bags due to my medical condition, and ended up dropping the contents from my wallet all over the floor. Very humiliating! In fact, I'm going to start another thread on that topic.

petunia Girl Love it you make me laugh.

petunia Girl.Wow . Actually I think Fibromyalgia is an autoimmune condition, but apart from that I am not necessarily dizzy when I fall, it’s weakness, limited strength to deal with the situation. Thank you for trying to work this out with me but I’m not on any medications that cause falls. The on
The only time I take Tramadol is when I can’t stand the pain any more, and by then I’m not doing anything but resting. but good thinking.

I agree that it seems to happen when I overdo things. I am housebound really because of this. If I do too much I just literally fall to pieces. Buck
Ing really is exactly what happens, a great expression to describe what happens. It is as if the part of my body just folds. The trouble is that it can be any part of my body and I would have to wear a brace to support every part of my body. When I say that I realize just how bad it is.

Dropping things, well when I used to go to the supermarket I would place my car keys on a ring attached to my handbag so that I could find them easily and place everything in my bag in separate spots so that I didn’t have to fish around. Which reminds me of another condition, it is more painful and difficult for me to stand and to fiddle with small things than to do almost everything else. strange but true. thanks for your kind thoughts every bit helps me get my head aroung this condition. Cheers Barb

Barb, hi, everyone has great advice & thoughts, I just wanted to tell you my biggest complaint to my PCP for over a year was muscle weakness !! As a matter of fact when she first said fibro, I told her again& again it’s weakness not pain, but I did have morning achy ness & an over all sick feeling, especially fatique. Thinking back the very first symptom I noticed was a weakness in my muscles, the would give out trying to blow dry my hair, fold towels, walk up stairs ect… That was 2 years prior to my diagnosis, unfortunately my muscle weakness has turned into pain, almost to the point if I even slightly use them, they actually feel bruised. And the pain has just become worse, along with horrible fatique. I am also a nurse, and this year have been out on disability, the long days and physical nature of the job, just really made me so sick, Do you still work???
Hugs & blessings

I think that Fibromyalgia is at least the 'hallway to autoimmune', if not a full blown autoimmune. Many are starting to think this way, I have heard the UK already classifies it as such.

Dee, thanks for your comment. No I was a nurse academic but could no longer stand long enough or even sit long enough to do the job. I have to lay back at a 45 degree angle or I accumulate pain. Also I was at the whiteboard and couldn’t write on the white board. There was no way that I could continue and that was 7 years ago.Fortunately I was close to retirement age and simply had to retire. the profound weakness confide me for a long time and some doctors thought that I had motor neurons disease but I simply did not deteriorate quickly enough to maintain that diagnosis. This is a dreadful condition but I think that it is neurological rather than muscular. I think the muscle pain is associated with neurotransmitter and that this is an autoimmune disorder associated with the central and peripheral nervous system. What troubles me is the label and the notion that this is just about muscles. Sorry I have gone on a bit, and I am sorry that you have this condition. I haven’t worked for over seven years now and I have progressively deteriorated each year. Take care Barb

Hi Barb,

It sure sounds like you're still a Type A even though you're housebound (which, by the way, I'm sorry to hear as I know how limiting and isolating it can be.) It sounds like you've made housework your full-time job and are having the same "blow out" that most of us have experienced at our jobs prior to leaving them. Just because you're at home and not officially "at work," it doesn't mean that you're not still working and fibro won't notice all of the working out of your muscles you're doing.

Yup, your sentence about needing a brace to wear around everything really does sum fibro up. (And for myself, I know these braces are just a stop gap measure. At some point my weak ankles will stop holding up under them, I suspect.) It's good that you're getting a lot of perspective simply by summing up your condition.

Oh yeah, fiddling with small things, yeah, I'm gonna go their in a thread. Needs to be discussed. Thanks fr reminding me.

And btw, I wonder myself if fibro is an autoimmune illness, although there is no proof yet of any "damage." We shall see!

Take care and have a good night!

Thanks for your comment Petunia girl.
here in OZ it is of course the middle of the day but nevertheless I wish you good night.
You are so right about being busy since my chronic fatigue has improved I have written a book and I’m trying to get it published now. The book is on my experience with this condition. Since I 've finished that book I,ve started to write a novel, so it’s who I am. I guess it gives me a sense of usefulness even if I do go at it like a bull at a gate, as I said it is really who I am and that is not going to change in a hurry. In respect to damage I only have to look at my muscles to see the damage, microscopic muscle biopsy says I’m OK but my muscles hang off my bones. Cheers anyway and thanks for your contributions. Barb