pelvic muscle atrophy

[Guest tearose]

Well, you all know how we make an appointment to see the specialist for the "follow up" and then finally the date is here...I decided to wait one more year to go back to Mayo but I am going to see my urogynecologist in NYC, on Monday, Jan 10.

I went through a complete pelvic reconstruction (fall 2002) about six months before I had further and in depth information on my dysautonomia. I didn't think then, before surgery, to ask if the pelvic muscle atrophy was directly related to dysautonomia. So now, I am going to see if my pelvic reconstruction held up or if things have collapsed again. I have been having some trouble again...I'm hoping to discuss using internal weights to regain muscle there.

Please help me focus on the right questions to ask so I get the answers that help.

I do understand that we are prone to muscle wasting. Do we have any research to back that up?

Maybe briar you have a link? Anyone know who documented this? Forgive me if it is in an obvious place...just point me in the right direction!

For my appointment, I think I want to ask: "Does having dysautonomia pre-dispose me to pelvic muscle prolapse?" "Does the surgery just help things in the short run?" "Can using the weights help".

What else? Many thanks, tearose

[Jersey Girl]

I don't have the answer you are looking for but would be very interewted to know as well, as I am dealing with some mild muscle wasting on my entire left side that no one seems to be able to explain despite many MRI's. My muscles are also sonewhat hypertonic on the left side and give me pain mainly at the base of my skull, neck, shoulders, upper back and rib cage (front and back) and I don't know if it is related to the muscle wasting. It's weird because my face has the opposite problem with a slight droop. When I first became ill I remember telling the doctor that I felt weak on the left side (which he dismissed because he couldn't explain it) and my muscles seemed more flaccid. It felt worse than anyone could see yet I had an entire stroke workup three times over the course of 6 months which were all negative. I would definitely like to know how it relates to POTS. Martha

[dizzy]

I don't know if this relates to your condition or not - but I was told that EDS could lead to uterine prolapse.

[calypso]

Tearose,

As you well know by now, I have considerable muscle wasting but none of the six or seven or however many doctors that have examined me can pinpoint why. They all seem to agree that it's "neuroendocrine," although that is the reason for practically everything that happens in the body. I can only guess that it has something to do with elevated epinephrine/norepinephrine levels. I just had these tested last week so I will soon know if I am overproducing. My cortisol level was very normal, so it's not that, even though one doctor suggested it was (before I had it tested).

I have a very generalized pattern of wasting. I don't know why one might waste in certain areas but not others; I would think this involves a nerve problem.

Amy

[Guest tearose]

Hi Martha, I'll be sure to give an update. Thanks to your encouragement last time I had a bad spell of muscle weakness, I took out my yoga mat and began to do gentle exercises again. Did you ever try the coconut that Opus88 suggested? (You have more symptoms on one side, just like me too!)

dizzy, oh boy, I don't even want to consider EDS...it has never been dx in me. Thank you for the thought but I hope not. I was told by a neurologist, that my form of dysautonomia pre disposes me due to the massive quantities of norepinepherine my muscles bathe in at unpredictable and various times.

Amy, I ache when I hear how bad your muscle wasting is...how are you doing? I too had normal cortisol numbers! The only test that showed the problem was the standing/sitting/laying bloods drawn at Mayo on my norepinepherine levels. I hope your tests are as conclusive! About why some muscle groups are more effected....I tend to pick up heavy things and rest them on my pelvis since I have no arm strength. The urogynecologist said I had actually tore the muscle away from using a damaged, weak muscle...I'm trying to say that the muscles that may end up extremely damaged are most probably the ones we used when we were weak. Also, since I tend to have more symptoms on one side of my body, my troubles may not only be in the ANS but CNS.

thanks for making me think through this more, tearose

[opus88]

I'm gonna sound really dumb here, but I'll ask it anyway. When you say muscle wasting, are you saying you have marked deconditioning and are therefore weak, or is muscle wasting actually something that can be pinpointed, diagnosed, viewed in tests or documented in some way other than just saying "I feel weak"?

I have always referred to my situation as deconditioning or loss of muscle tone. I used to be very fit and quite strong for my size (worked out 5 or 6 days/week), but now I'm probably closer to a typical 90-year-old in strength and fitness. Is this the same thing you are talking about? And is there more to it than just being too sick to get any exercise, therefore the muscles gradually lose their tone?

[DancingLight]

tearose,

i was wondering the same thing that opus wrote...i wasn't sure quiet what symptoms led you to the urogyn. that is a long trip for you isn't it? i can't remember where you live.

you are right...we are all falling apart! what is up with that!?

i hope the visit gets you some answers. please keep us updated. you always offer me such words of wisdom and i can't come up with any right now...sorry. just wanted you to know i'm reading and listening on the other end!

emily

[Guest tearose]

Sometimes it's hard to put it together, I'll try again...

After my first TTT in 1998 I was told not to allow myself to ever become deconditioned because

my POTS symptoms would worsen. I was made to feel that inactivity was capable of doing fast damage. So after being discharged, I went on my way not knowing a thing about pots but vowing to be faithful to being active. I just thought activity would keep my symptoms at bay.

I was still a mess but shut up about it and tried to keep looking for answers...sound familiar?

I went to the urogyn three years ago because I was having major trouble with all my pelvic organs. I had slow movement, bladder leaks, pelvic pain... I had documented through 2 MRI's rectocele, cystocele, enterocele, collapsed bladder...basically everything fell downward and hurt! I thought since my other muscles were prone to being "weak" and needed exercise, maybe my pelvic muscles were weak too and just needed strengthening.

What my well hunted out best I could find urogynecologist said (he is actually excellent): Muscle weakness is similar to deconditioning. The muscles can be retrained/strengthened with careful deliberate exercise. Muscle wasting is a more serious condition. It is when the muscle has actually deteriorated beyond rebuilding...in most cases. My muscle wasting was seen as minor-moderate on MRI but major-drastic during surgery. I had insufficient muscle tissue to repair and the urogyn had to use a lot of mesh to reattach my muscles with sutures to my pelvic bones.

Okay, here it comes...

I want to know if some types of dysautonomia makes one more prone to muscle wasting.

I want to know if my muscle wasting is attributable to my form of dysautonomia.

And ultimately, I want to know if this is something else, in addition to dysautonomia..

Whew, what a mental workout!

What you may not recall is that I have also been through some facial neuritis and other funky things in the past two years that I'm trying to figure out what is related to my dysautonomia and what is not. I don't wish for anything else but I also do not want to ignore something. I was to return to Mayo for a two year follow-up in February, but I just can't do it right now. I know they would have answers, but I just can't go right now. My symptoms although getting worse over the years seem to come and go over the course of several weeks- couple of months. I want to wait one more year.

Additionally, to answer you opus, the neurologist uses a spring type gauge for me to squeeze and he measures my muscle strength that way. My EMG (ouch, bigtime) was fine, although that was done a long time ago. I also could not physically turn doorknobs, or open jars or get off a chair for a spell either. He knows I will report all my symptoms and thing like dropping my laptop (drastic weakness) is not something I do normally! This kind of muscle weakness came without warning and has shown improvement over time.

tearose

P.S. The films are actually one CT and one standing MRI. Heaven help me I've had so many of both I can't keep track!

[DawnA]

I do not think muscle wasting is a part of dysautonomia unless it is caused by severe deconditioning. The gauge thing that your neurologist used is probably a dynamometer. It just tests hand strength. Do you have neuropathy? Distal weakness is common in neuropathy. But it also sounds like you have proximal weakness. Do you have difficulty with walking? It sounds like you may have something neuromuscular going on. I am sure you already know that. It will be interesting to see what Mayo says next year. But maybe you will be doing better and not have to go!!! Wouldnt that be nice.

Dawn A

[DancingLight]

tea,

i don't know any answers to any of your questions! i wish that i did!

you have been through so much and every day your spirit amazes me. you are such a blessing here...just wanted to tell you that.

so, i can give you an ego boost...but no answers to your questions...

oh, and soaps! man, the first year i was sick i didn't miss days of our lives. it made my mom nuts! i got into all my children too...but haven't watched them in so long! you are right though...it is a shameless indulgence as i like to call it, and you only have to watch every once in a while to figure it out! i am glad that someone else admits to watching them.

i have a friend who is 87 and she watches her soap every day. she contributes to an organization that creates soaps for other countries to teach about family planning, aids, stds, pregnancy, etc. so, she watches her soap and talks about the social issues it addresses! she is BRILLIANT and has a PhD, which for a woman of her generation is amazing.

so, the moral of the story is...you can pass off watching a soap as 'educational'!!!!

now, does that make you feel better or what?????

goodnight!

emily

[DawnA]

I thought I would post a list of things that cause muscle atrophy. I was interested in finding out. THey said the biggest cause is disuse.

Even minor muscle atrophy usually results in some loss of mobility or power.

Common Causes:

some atrophy that occurs normally with aging

cerebrovascular accident (stroke)

spinal cord injury

peripheral nerve injury (peripheral neuropathy)

other injury

prolonged immobilization

osteoarthritis

rheumatoid arthritis

prolonged corticosteroid therapy

diabetes (diabetic neuropathy)

burns

poliomyelitis

amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)

Guillain-Barre syndrome

muscular dystrophy

myotonia congenita

myotonic dystrophy

myopathy

Hmmm is florinif a corticosteroid? Could it cause atrophy? A lot of us take it.

Dawn

[calypso]

Opus,

Muscle wasting is a process that is not a result of not exercising or muscles losing their tone. It is when you actually start LOSING muscle mass due to a disease process ... it can be metabolic, or neuropathic, etc. Cancer patients often have muscle wasting because of the production of a tumor hormone that hikes their metabolic rate. This is one reason why cancer patients lose so much weight and become so weak; it's not only because they don't have an appetite or are getting chemo. Same thing for some people with severe congestive heart failure. This process is called cachexia, which is a wasting-type illness that also is associated with chronic conditions like rheumatoid arthritis. I kind of wonder whether it is associated with chronic fatigue syndrome and POTS, but haven't been able to get an answer on this from my doc -- he's just not that knowledgeable on all the potential dysautonomia symptoms.

I agree that wasted muscles can't be regained like they can from weakness. I can do exercises all day long and lift weights, but the muscles don't get any stronger. In fact, I did several months worth of weight training and actually LOST more muscle than I gained. I get so angry when doctors tell me that I just need to exercise more and I'll get better. That's garbage; I can barely exercise for more than 20 minutes these days, when even in the first few months of POTS I could go for a half-hour to an hour.

Amy

[opus88]

Wow. The human body is soooo incredibly complicated, isn't it? What may appear to be the same situation for a handful of people can be a different reality for each person - different reasons for the same symptoms. What a mess! Do you suppose anybody will ever really understand the millions of processes that do and can occur in each of us?

Many thanks for the information. Being on this site is such an education!

[Guest tearose]

Thank you for talking this out it is helping me fine tune my questions...

opus, dawn, emily, and amy, (anybody else too) isn't the final question something like:

In people with hyperadrenergic forms of dysautonomia, is is possible that the muscles are losing mass/atropying due to the metabolic process caused by such high levels of norepinepherine?

Did I say it clearly enough?

tearose

[calypso]

Tearose,

That's crystal clear to me. And a darn good question. If you ever get an answer, I want to be the first to know!

You know, one other thing I wonder about is if we are losing muscle, can we be losing bone mass too? When it's metabolic, these problems tend to go together (i.e., Cushing's disease causes both bone loss and muscle wasting). I certainly hope my bones are OK.

Amy

[DawnA]

Tearose, I think that is a good question!! Also , what is causing the POTS is where the answer may lie. I was reading on metabolic myopathies last night. It stated that muscle wasting was more common in nerogenic diseases meaning neuropathy. I thought that was interesting. I have evidence of a metabloic myopathy. Hoping to get meor answers soon.

Dawn

[DawnA]

Also I was thinking of another thing. Why are so many of us exercise intolerant. I am unable to do any anarobic exercise (weights, stairs) without paying for it majorly. I try and stay active,but it does not take much to set me back. It is so hard to balance the activity rest. Right now I am in a slump and feel that I have not pushed myself enough lately and this has made me worse.

Dawn A

[opus88]

I just posted some info under the Night Sweats topic. The link there may give a little more insight into some possibilities, as the muscle wasting may be related to chemical ratios more than an individual hormone. Both ideas certainly seem plausible to me, though.

[Guest tearose]

emily, I keep on forgetting to answer you, I'm just so deep in thought on my questions...sorry;

I live in Northern New York, it will take me about 1 1/2 hrs to get to NYU medical center. But this doctor is excellent, I did major research on him before going into surgery!!! Thank you for making me smile from the inside out I appreciate just the "knowing" that you are beside me!

Okay emily put on your thinking cap... back to work:

I'll read up on the bone loss thing tonight Amy, do you have that? My last bone density showed normal for my age (40's).

Dawn, I will read up on metabolic myopathy and neurogenic diseases to prepare. Thanks for the tip. Any summary you can give in the meantime? Do people with these conditions have our kind of dysautonomia? I promise to read later...just wondering if you took notes...

Also Dawn, I want to be careful not to go back to the "what caused it to begin with" question IF it is going to take the focus off the real issue. Which is, the muscle atrophy and the hyperadrenergic dysautonomia. As you know, it could be years before we or the doctors can figure what the original causes are...but maybe just getting some research scientist to dip some muscle tissue into a bath of norepinepherine may at least explain what is going on in the present to us. Also Dawn, I understand how wiped out you feel! Sorry cutie, but you still gotta find a way to get your butt on the floor and creep across the floor!! Just turn on some music or tv and sit with your legs in front of you and move forward "walking" on your bottom. That is your homework for today! We are not going to let you get deconditioned! Next week you'll try leg lifts...just do something!

opus, do those chemical ratios include norepinepherine? I'm not clear yet.

When the norepinepherine is dumping are the muscles becoming more active because of a reaction to a chemical over-reaction? or is it the norpinepherine itself?

okay folks, time to rest my brain...tearose

PS any notes/summary on what you read will help!

[Nicole's Mom]

tearose,

I don't know about muscle wasting. But I am posting because I want to say a bit about you. First to repeat what Emily has said about your spirit. You have an amazing spirit in spite of all that you deal with. You are indeed a blessing to this forum. You are accepting yet not resigned. And you show a lot of courage. There is a lot to be learned by reading your posts in the way of these attributes.

Beverly

[DancingLight]

well said beverly!

emily

[calypso]

Tearose,

I have no idea if I have bone loss. I have been so busy pursuing the cause of the POTS and other symptoms that I didn't stop to think what might be affected in my body that is not showing symptoms yet. Maybe I will ask my doctor about doing a bone scan soon.

Amy

[Ernie]

Hi,

I don't know if I have muscle wasting but I have muscle weakness and my specialists believe that it is linked to the hyperadrenergic state. I also hope that doctors will find a solution soon because if it was not for that muscle weakness I would be able to do a lot more.

Ernie

[DawnA]

I did a lot more than get my butt up and crawl across the floor. I went to the mall with my husband. I found many places to sit and it took all I had to walk. I often felt like crying, but I did it. I actually feel a little better.

Neurogenic, meaning neuropathy can cause POTS. I have the diagnosis of autonomic neuropathy and POTS and so does my daughter. As far as metabolic myopathy, mito falls into this category and most of the mito patients I know have autonomic problems. Metabolic myopathy is pretty rare and probably not something you need to be concerned about. Neuropathy is more common.

I am looking furthur into the cause of my POTS, because I have multisystem involvment. Having answers may not help me much, but for genetic reasons it is very important to me. I just had two aunts die from what I believe to be mito. My grandmother died at 47 and my mother is doing poorly at 67. Both of my children have many medical issues. I always wondered why? I breastfeed and we have always lived a healthy lifestyle. Now I know it is genitic. I worry about my children having children with infantile onset, which is fatal. I won't be at peace until I know I have pursued this furthur.

I am looking forward to the day I have exhausted all possibilities. i am so ready to just concentrate on just trying to deal with my limitations and enjoy life to the fullest. I guess I should just look at this as an adventure of trying to find my way through this medical maze. I hope I don't run into many more road blocks or difficult medical personnel on the way.

Dawn A

[Guest tearose]

Bev, emily...don't you see? We reflect back what others have given us...so then my friends, thank you for helping me to be able to share what I see and feel.

Yeah Amy, ask about that test. I guess you may have to insist since your so young. Do tell what happens.

Ernie, I hear you; we would love to get up and go! Our head says go and the body says NO!

DawnA, I am so amazed, the mall? That is incredible. You did it! You will sleep well tonight...I hope. Are you getting warmed up for the Mall of America?

Perhaps you will be able to take some of these questions with you to the OZ wizards of Mayo.

I'll give you some sugar-free cookies if you'll ask!!!

Thank you for your notes on neuropathy. I know I have autonomic neuropathy, small fibre, but that just describes my condition. I too am looking for more understanding on what is going on.

For the exact reason that was stated: how can we be so exhausted when we are doing everything right? How can our muscles be so weak when we are using them? And for some of us, it is not just weak muscles that presents a problem, but disappearing/ deteriorating muscles!

I do feel it is important that we multi-task and deal with our symptoms while we figure out the bigger picture...I guess I'm doing that now. I hope someday to have grandchildren and like you stated, I too see the value of the long term big picture. I hope you will get answers. I hope we all get answers. I'm glad we can manage to weave some joy (or some trips to the store or some bottom walks on the floor,) in between all the road blocks and lousy doctors!

I guess I'll do that reading tonight...thanks friends, tearose