? Help,...muscle wastage.,,,getting my head around the subject

My rheumatologists, gp & pain consultant keep asking me if I'm experiencing muscle wastage. I tell them: well, yes, but isn't some degree of muscle wastage "normal" for my age (60) and diagnoses: infant onset SLE, global hypermobility (ligamentous laxity), tendon tightening, clinically diagnosed Ehlers Danlos etc etc etc...with vasculitis being watchfully waited for

my gp thinks muscle wastage has been already affecting my feet/ankles/hands....but, hey, even if i'm not v strong, I can still "use" these bits of me....although I can't do much cause, I'm told, of progressive degeneration due to 58 yrs without systemic lupus treatment....cause my early life diagnoses got lost when i moved to the uk where no drs connected the dots of my many medical crises over the years .... But, ok, i manage a bit of carefully rationed walking, basic household chores, physio exercise regimes etc...all so much easier now I'm on the right meds

So, I'm wondering if anyone on forum can give me some pointers about what muscle wastage symptoms actually are - what I need to be looking out for, AND why drs of a patient with my profile would be expecting me to show muscle wastage. Also, how is this treated (sle finally rediagnosed 2.5 yrs go: treatment began with plaquenil, + amitryptiline + pred tapers + now on myco etc)?

22 Replies

  • Barnclown...I found out by myself that I had muscle wasting. I read my own blood work and researched online. Creatinine was elevated and protein when I ended up in emergency room unable to pee (sorry so graphic). Dr gave me anti biotics and some brown pill to help me to pee and said follow up with urologist (my lousy ins refused to pay that bill saying a UTI was not an emergency). High protein and creatinine led me to kidney problems, which led me to a sono which found kidney scarring. Besides all these tests, I know I was getting weak muscles years ago. Having trouble climbing stairs, walking long distances tired me out a lot even though I did it daily. Thought it was my thyroid (slightly hypo with nodules). But, to make u feel a little better...I started riding my bike every day and a year later my numbers are in the normal range. I don't know if exercising saved me, which I truly believe is important, but I feel stronger. I have muscle back in my legs...so the old saying use it or lose it is real... I am sorry for your troubles, i am 50, and it does seem to get harder to keep strong. Take care please!

  • Thanks natura...vvvv glad you're improving! Yes, agreed re exercise...this is why I've kept at a routine all these years, no matter how poorly I've felt...of course there has had to be time off, but even then, i'd do whatever stretching I could manage...it's been all about realism & compromise...rationing & pacing....


  • It sounds like you are taking care...I try not to push when I am tired. I listen to my body too. I feel guilty for not exercising every day, but sometimes it can't be done. This week was not so good. Only got 3 days in this week. Hope to exercise tomorrow. Does stretching help? I use to do yoga but I have a herniated L5 disc and bending over hurt. It never got better or stronger and eventually I stopped.

  • You're speaking my kind of language... Thanks natura.

    I've replied in more depth below to margaret, but could go on & on in the same vein replying to your kind replies...haha, , actually, I have gone on & on in the past here....replying to questions & blogs about how to manage exercise despite lupus etc....describing the ways I've somehow continued being relatively physically active and exercising all these decades despite my injuries,spine ops, chronic pain etc etc.

    So, it's hard to imagine that i can't believe, with some confidence, that, yes, despite everything I've had against me, I've spent a lifetime fruitfully complying with the exercise advice of my health team and i know this achievement has paid off. Yet now, when I'm feeling better than I have all my life, thanks to 2.5 yrs of treatment for SLE, i find drs are peering at me asking about muscle wastage....I don't think I'm paranoid, but I do wonder 'what's the agenda'....

    Whatever. The muscle wastage I do seem to have is in my hands, feet & heading upwards in my legs & arms. and I'm already doing exercises for those areas...have been for years.

    My feeling is that my drs ?s re muscle wastage are to do with progressive deterioration and damage in the furthest parts of my extremities due to damage there from untreated SLE....probs with circulation & peripheral nerves. Eg, quite severe simultaneous erythromelalgia & raynauds plus CRPS in my feet & hands....I have a feeling all this, + my hypermobility conditions & age, is leading my drs to wonder about muscle wastage & me....my gp made me get tested for MS back in the '90s, but, back then, I was clear of MS....

    Anyway, thanks for encouraging me to think this through...

    Take care

  • Maybe barnclown, staying away from doctors a little bit might not be a bad idea. If you are feeling ok and feel u r managing ok. They don't know everything. No one knows u as well as u. I am a worrier already. Sometime it good to step back and go on vacation. Ha! That's what I want to do right now. I am a little overwhelmed by all this. I am looking forward to sunny, warm weather. Can't keep me out of the sun. I love the sun...will wear a big rimmed hat!

  • Thanks, natura, I appreciate the thought...if only! And your kindness cheers me up. The main thing is that a_scot hit the nail on the head: i'd simply forgotten about the diff between muscle wastage & weakness....and my teams' suspicions re me and dermatomyosotis! Oh the delights of cog imp + being 60!

  • What is the difference between wastage and weakness? I did not know I had wastage except from blood work. I only knew my muscles felt weak like I didn't have muscle anymore and thought since I use to work out my entire life that I could get them back my strengthening them again. I can't do weights anymore, but I can move still.

  • good question! something to ask our drs sometime....usually my drs are asking me specifically about weakness. eg trouble raising arms etc... e.g. i have been temporarily unable to move at all/'paralysed' which they referred to as weakness. after a_scot reminded me, below, about dermamyositis, i recalled my drs mentioning that condition when talking about my muscle weakness & other symptoms (my eyes, rashes, etc etc). anyway, the Rx i'm on is appropriate for this condition too...so i'm happy: the ? i asked here is answered: now i feel clearer on why my drs are monitoring me re muscle weakness. it's good to have got my head around this subject: thanks!

  • I only discovered that I had muscle wastage after seeing the physio for extreme pain in my leg. He said and I quote "do you know that you have a compleley wasted left buttock"? No I said! Anyway after a course of physio and exercising at home it made a complete recovery. :)

  • Thanks Margaret. Yours is the kind of story that makes me even more perplexed by my drs & co's question, "are you noticing muscle wastage?".

    All my life, despite a lifetime of persistently dodgy health and constant chronic pain, I have maintained what my physios & osteopath & Pilates & tai chi etcetc instructors thought a decent exercise regime..muscle wastage has never been mentioned until very recently.

    I look at others my age, with no chronic illnesses, and I think: I'm somehow seemingly in better shape than many are.....and my drs tell me all the conscientious lifestyle management I've always done has helped me with this

    Of course, i know certain meds e.g. Steroids, can cause muscle wastage. But my exposure is much less than others have here on forum. Hmmm. My feeling is, that there is a medical reason for my drs' muscle wastage ?. Something to do with my chronic lifelong symptoms & diagnoses. My impression is that this could well be more related to my 'hypermobility syndrome' conditions (arachnodactyly, marfanoid, Ehlers Danlos characteristics), than my lupus, cause (other than re steroids treatment) I've found more about muscle wastage on the hypermobility assoc. website than here

    But we'll see If anyone replies along those lines to my ?.....

  • As far as I am aware I only have SLE possible Fibro but I wasn't on steroids at that time so totally perplexed.

  • yes: can't understanding this stuff so often be so perplexing!

    for what it's worth, i think you've understood your version of muscle wastage: yours responded to physio & exercise, so you got the right regime going and have seen improvements

    i'm feeling my way into understanding what my version is about....and my impression is that it's mostly about something other than not enough exercise....but like you, i haven't been on steroids that much....

    well, thanks again margaret.....i am now facing that i must simply look at doing a major rethink of my physio regime in light of all the diagnoses sorted out for me over the past 2.5 yrs....

  • I too have hypermobilty type 3, as well as lupus and RA and adrenal insufficiency. Basically my legs have no definition or shape. Lost my calves. Knees and thighs merged! My legs and bum are spongy and jelly like. They ache.

    Starting physio next week!

    Good luck x

  • thanks behappy: you're hitting the spot with your reply

    i think i need to get onto this too.....a major rethink with my physio....she knows about the refinement of my diagnoses, but i wonder if she has really really put her mind to how we need to modify my physio routine to prevent muscle wastage.....with the help of a foot wizard prof ortho surgeon, i HAVE recently completely modified the routine for my feet and they ARE responding really well...

    how old are you, and how long diagnosed & in treatment? how did your drs diagnose adrenal insufficiency, and how are you managing that?

    you're managing a lot there....hope physio helps!

  • [quote="Barnclown"] ... why drs of a patient with my profile would be expecting me to show muscle wastage ...[/quote]

    Steroid treatment can cause "acquired myopathy" ... en.wikipedia.org/wiki/Acqui...

    As can plaquenil ... path.upmc.edu/cases/case567...

  • Oh my gosh! That's it! You've got it!

    I've been thinking hard TRYING to remember what & where I'd been reading about muscle wastage as an indicator of specific aspects of conditions, and your links have hit THE target...I'll now check these subjects out in the lupus & sjogrens & hypermobility reference books I've got here...am pretty sure I'll find info relating to your links...I've read & reread these books several times over the past 2.5 yrs as the 'process' of my diagnosis has evolved: EACH time I pick something up I'd missed or read inattentively...and to think I'd never even heard of lupus let alone Ehlers Danlos before...

    MANY thanks a_scot!!!!!!!!

    Yes: your wiki link is spot on: eye symptoms, hands etc etc...and mycophenolate is mentioned in treatment!

    It seems as if almost ALL of us have overlapping autoimmune conditions....which makes for quite a lot to understand...and I'm the type who copes much better once I'm relatively fully informed

    and my DES daughter status, apparently, predisposes me to an even wider range of clinical problems

    Am v grateful

  • Hi barnclown,

    My physio told me a few weeks ago that I had muscle wastage in both my legs. I thought as much as my legs had totally lost shape and sometimes I can barely hold my own body weight and I suffer with awful leg pain and aching. Wishing you well and I hope you find some relief soon. X

  • Thanks sezzie!

    Am wishing you the same!

    The Rx i'm now on + the gastrocnemius stretching my feet wizard prof ortho surgeon recommended last nov are helping reduce my legs & feet pain/aches/cramps....so, I'm getting some relief...but this stretching is ARDUOUS and v hard on my hands which would be as poorly as my feet if I walked on them (this gastrocnemius stretching is 40 min per day, 20min a.m. & 20min p.m., alternating legs every minute...am in my 16th week and can now walk without a cane....and I'd given up hope anything could help, after years of my feet & legs condition worsening despite all efforts of me & my medical team). And now i know that there are surgical options for aspects of my feet stuff, but, due to my version of overlapping conditions, operations are a v bad bet.

    I feel shy about saying this, cause managing our stuff is so vvvv hard, but: hold onto hope


  • Thanks barnclown,

    We do have a lot to deal with on a daily basis which I think makes us stronger and Lord knows we need strength! Xxx

  • So true!


  • In answer to the question, the lupus can affect the muscles directly. The joint pain can lead to not doing a lot of strenuous activity and as they saying goes, use it or lose it. Steroids can also lead to muscle wasting.

    If you have muscle wasting you will probably be able to see it. I wonder if your doctors have actually examined you because they should be able to see it as well. Certainly an experienced physio should be able to see.

    I have it and I can definitely see it. Particularly my hands.

    You will also notice you can't do things other people your age can do. Opening packaging, lifting and carrying, etc.

    Does your physio know about arthritis and/or lupus, they should be able to best advise you. Also consider asking for a referral to an occupational therapist in rheumatology. They can also help.

    Its important for people like us to get supervision with exercise, because the wrong kind can actually encourage the muscle wasting, in my experience. I mainly stick to walking, housework and some specific exercises from specialist physios.

  • Yes, herb, everything you're saying fits with my experience.

    2.5 yrs ago at my re-diagnosis I spent 2 hrs being examined physically by the leading lupus expert rheumatologist at my clinic + going through my medical history in detail & beginning treatment. Since then i've been closely monitored in clinic, and by my other consultants, osteopath, physio, gp etc, and my treatment plan has evolved. You're right: the muscle wastage & weakness I have is clear, and is always touched on at my various appointments, but there is only so much we can address each time, and discussion about other more pressing & severe symptoms has taken priority...until now.

    My next clinic appt is v soon. thanks to you and all who have replied to my ?, i now feel much better prepared to discuss the condition & treatment of my muscles.

    I'm v grateful to all!

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