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Posted 2/16/2008 6:38 PM (GMT 0)
My last lab results showed high level (56) of ALT (liver enzymes). My rheumy said it could possibly be from Myositis which is muscle inflammation. It could be that lupus is not only attacking my joints but my muscles too. She asked if I was having any muscle weakness and I have experienced some weird things but would like to know if any of you experience muscle weakness and to see how it feels?

It just seems to be one thing after another, when will lupus stop wrecking havoc on our bodies? Anyway, been a little down, trying to not let it bother me thinking it may be a freak thing and in 2 weeks when she checks it again all will be well. Thanks for listening.
Posted 2/16/2008 9:56 PM (GMT 0)

Hi Stacie,  

My weakness creates a shaking thing.  I wasn't weak at first it started with a burning pain and then regular pain and then i lost a lot of muscle in my arms and legs i'm sort of excess skin and flab now. :-)   I can barely hold my arms above my head to shampoo, sometimes its worse than others.  Sometimes a cup of tea seems like 1,000 pounds and when i go down a set of stairs my legs shake and quiver like noodles.   Lastly i get this inner tremor feeling through the muscles its very weird.  

What type of weird things do you experience?

I'll be wishing you the best.

Posted 2/16/2008 10:12 PM (GMT 0)
HI Catzz,

Thank you for sharing your experience with me. Ok so I'm not crazy.... Like you, sometimes my legs quiver after walking up/down stairs. I've also experienced a burning sensation in my thighs, feeling it mostly when I sit or get up from a seated position, but it doesn't happen every day. So I don't know if my elevated numbers are from my meds (Imuran) which I have been on for almost 3 years or if it is the muscle inflammation.

Thank you again!
Posted 2/17/2008 12:13 AM (GMT 0)
(((((((((((Stacie)))))))))))) Oh . . . that IS scary. I hope your doc figures things out quickly and I'm glad here a couple of Myositis members here who have made a good turn around from this. Hopefully they will post and give you some encouragement. Stacie, I hope you'll keep us posted. Sending a hug and some prayers . . . and some hot tea for you! Blessings!
Posted 2/17/2008 12:29 AM (GMT 0)

Hi Stacie.

One of the first symptoms I experienced was intense muscle weakness and burning.  Honestly, if had persisted for longer than a few weeks, I dont know if I could have handled it. It threw off my diagnosis for over a year.  My rheumy wasnt so sure that it wasnt myositis or fibromyalgia.  My thighs are the worst, and will ache and burn for no apparent reason.  At first, my muscles burned from head to toe, mostly my arms and legs.  Now, it seems to have settled in my legs.  I have those days that the stairs turn me into jello, and even standing in the kitchen cooking dinner will do my muscles in.  I usually take a half of a Soma and a Tylenol and go to bed.  There really isnt a day that goes by that my muscles dont ache and burn.

My rheumy suggested at my last visit that he has seen a connection between inflammatory bowel diseases (my mild Crohns) and myositis.  I intended to look further into this, but have not had a chance, since that was just last week.  I have noticed that when I eat spicy foods or anything that I know that I am sensitive to, the burning seems to be a bit worse.  But then again, it happens for no reason as well.  I so hate this disease.  I wish I had more answers for you, just know we are in this together.

((HUG))  I hope you get clarification on this soon.  You are in my prayers tonight. 

Blessings,

Posted 2/17/2008 2:20 AM (GMT 0)
Rosie, thank you for the hugs, prayers and tea. I will keep you updated.

Victoria, Thank you for the hugs and prayers too. I was wondering how the doctors decide whether it's fibro or myositis.... well now that I think about it, I guess labs would tell them. I think I've had muscle weakness on and off since 2004 but this is the only time its showed up in my labs. I guess it's a good thing that I am on Flexerill which is a muscle relaxer, it's probably helping more than I know. You know we've said this before but we have A LOT in common, I pray you are feeling well!

Do the muscles in your back around your shoulder blades knot up real bad? Just curious....

Thank you again! Hugs and luv
Posted 2/17/2008 3:03 AM (GMT 0)
Hi Stacie, I'm sorry you are going thru this crap! It does get pretty depressing somtimes. So I think we can all relate to it getting you down. The weakest muscle in my body these days seems to be my brain. BUT I do get raging burning pain in my left should blade up to my neck. Like the muscle was grabbed from each end and streched as far as it could go. As for other muscles I have most of the problems when I get up in the mornings. My legs are so tired I have to really almost drag myself out of the bedroom. Not cramps it just feels like they weigh a ton. I don't have that all the time but when I do get it in my legs it seems like it takes weeks to go away just to come back again later. Lately I have been having alot of muscle twiches in my ribs and in my arms. It doesn't hurt just annoys me.
Let us know what the doctor has to say. Itook some flexeril one day and all my pain went away. Unfortunately it dries ya out and I can't take it because of my breathing problems. :(.
hang in there
love ya
carol
Posted 2/18/2008 3:22 AM (GMT 0)
Hi Stacie, I've also experienced the burning sensation and legs turning to jello-- stairs are the worst!
As for the pain in the back, I know my dad who has lupus and rheum. arthritis has terrible back pain. But he also has two slipped disks, one up by the shoulder blade. I don't know if that helped at all. good luck, take care
Posted 2/18/2008 4:16 AM (GMT 0)
Stacie,

There are 3 main types of myositis, polymyositis, dermatomyositis and inclusion body myositis.  I have PM and the common symtpoms of both pm and dm are difficulty getting out of chairs, going up stairs, raising your hands over your head, and sometimes swallowing.  It is true that lupus can cause muscle weakness but it is not characterized by weakness in the proximal muscles like pm or dm. 

There are many other minor symptoms and each case, like lupus, is different.  The two blood tests that are usually, but not always, indicate an active myositis disease are sed rate and cpk.  The sed test indicates an inflammatory process but does not diagnose which one.  Cpk is a measure of muscle breakdown and is is usually present in myositis patients.

If your doctor suspects myositis you should have these tests.  Definitive diagnosis is usually done with a muscle biopsy.  I actually have mixed connective tissue disease (lupus, scleroderma and polymyositis).  Many who have myositis also have a connective tissue disease as well.

Bill

Posted 2/18/2008 4:47 AM (GMT 0)
I have muscle weakness in my arms... the top part of my arms.. Some days, I have a terrible time getting my arms up... it is in the part of the arm from the elbow to the shoulder joint... It is not an everyday occurance....thank goodness....

My cousin has dermatomyositis... she was diagnosied about a year ago... She had a terrible time.. is doing better and back to work now....
Posted 2/18/2008 4:10 PM (GMT 0)
Thanks guys, I appreciate each one of you so much.

Bill, ironically my last SED rate was normal. In 2 weeks she is checking CBC in addition to CPK and aldolase. Maybe it's from the Imuran, I had been taking 3 tabs now I am back to 2. I am hoping that is the reason.... will know more in a couple of weeks.

I will keep you all updated. Thank you all! Take care
Posted 2/18/2008 8:56 PM (GMT 0)
This IS interesting!
My burning sensation is in the calf muscles, knees, hands, wrists and feet and on waking every muscle in my body aches.
I get bad back pain.
I find going up stairs, getting off chairs, and raising arms awful. Even trying to hold a book whilst in a chair is too difficult/
Even walking up a slight gradient is difficult.
Well, I am gonna have fun in London. Bloods all are fine at present. Is CPK the same as CK, creatine kinase?
xAnn
Posted 2/18/2008 10:23 PM (GMT 0)
CK=CPK...they are the same.

 

Posted 2/19/2008 9:14 PM (GMT 0)

Well, the day after I read this post, doesn't something happen along these lines?  I'm walking back from class down the stairs with my bag full of textbooks when my legs decide to turn to jelly. Any other day, and i would have been able to catch myself but of course on this day I am wearing particularly high heels for a presentation. Man did I look like a fool. Luckily, I only tripped one step and clung to the railing for dear life.  As far as I know, I don't have myositis or anything like that...just a few weak moments. High heels are evil!!

Stacie- I hope all goes well with your tests!

Posted 2/19/2008 10:39 PM (GMT 0)
Yes I agree... heels are evil, lol! Thank you, will keep everyone updated.
Posted 12/31/2008 5:45 PM (GMT 0)
 

Hi,

I am new to this but not new to myositis.  I have had an ongoing condition for 10 years.  My blood work always comes out normal however I have all the signs of this disease.  I did have a muscle biopsy 9 years ago and the tentative diagnosis was polymyositis.  After doing to prednisone treatment and methotrexate for 3 years, I became frustrated because I know gained 60 lbs. So here is my problem, my blood work never shows inflamation, is it possible to have myositis but have normal labs?  I want my Dr to do another biopsy but she

is saying there is no reason to.  Any suggestions? 

Posted 12/31/2008 5:52 PM (GMT 0)
SRP,

The short answer to your question is YES. 

I have PM and had a extreme case but have recovered substantially.  While labs usually confirm myositis they don't always particularly with mild cases.  Just like lupus myositis can be a wil-o-wisp and difficult to diagnose.  Sometimes muscle biopsies don't show inflammation.  CK numbers can be normal or very low and even SED rate can be normal.  How you feel is a better indicator of whether your disease is active or not even if labs are normal.  At some point the labs will confirm why you feel like crap.

If you have to take prednisone again adjust your diet and you will not gain weight like you did earlier. 

There is another forum dedicated to myositis that has many myositans and you might find more information.  I have both lupus and PM and post on both sites.

www.myositis.org  

Bill

Posted 12/31/2008 7:44 PM (GMT 0)
Thank you Bill I greatly appreciate your quick response. I will check out the other site as well. When I first started having problems with pm I couldn't get up from a seated position without help. I know I am doing much better than I was but every now and again I have flare ups of something..

Thanks again
Posted 1/1/2009 3:17 PM (GMT 0)
This is very interesting.
I have an obvious muscle wasting 'disorder' and most evident in my extremities and a weakness in legs and arms, eg reaching up, down and walking etc.
But although I have been dx with sjogrens, and have crohns, hypothyroidism, movement disorder and possible early Parkinsons I am being sent to a shrink!!!
This is the third time in a week that a consultant has referred me to a psychiatrist and I think it is MAD.
the neurologist who DID NOT view my file, did not watch me walk, did not engage in diaglogue but monologue says the muscle wasting could be due to lack of use.
Dispite the fact that I have used power drills in past month and tend hanging baskets, been up ladders and type alot, although this is getting harder.
It is always the consultants who think I ought to see a shrink even though auxillary staff never see any probs with my mental health.
Eg the physios etc.
I will look at your site mentioned Bill. I am so despersate to be BELIEVED.
Happy new year.
Ann
Posted 1/1/2009 6:10 PM (GMT 0)
Ann,

Myositis disease have specific patterns of weakness.  There are 3 main types of myositis, dermatomyositis, polymyositis and inclusion body myositis.  Both DM and PM are characterized by usually pronounced weakness of the proximal muscles.  Those around the hip and shoulder girdles.  Some cases eventually involve a muscle wasting process but not all.

This weakness is usually identified by difficulty climbing stairs, getting out of chairs, and using your arms above your head for anything.  These diseases are also characterized by fatigue  so initially the symptoms could be with any number of diseases.

IBM is a totally different disease and progresses very slowly over many years.  Muscle weakness is usually noticed in the quads and in the forearms.  There is no treatment for IBM at this time.

Confirmation of PM/DM is usually done after meeting some of the symptoms and lab criteria and a muscle biopsy usually confirms myositis and what type you have.

I am sure you are aware that muscles can shrink (atrophy) due to misuse in someone who is completely healthy but is sedentary.  Atrophy can occur very rapidly within a few weeks as any athlete who had endured an injury can attest.  Myositis has more than one process that works on the muscle cells or capillaries and is different from atrophy which can also occur at the same time.  Confused?  A lot of doctors are also when trying to diagnose one of the myositis diseases.  You have weakness now but consider how it came on initially.  PM/DM often comes on fairly quickly over a period of weeks or a few months.  Having other ailments might have caused your weakness coupled with inactivity.

http://www.medicinenet.com/polymyositis/article.htm

Hope you can find out what ails you.  I know you have been trying for a long time.

Bill

Posted 1/2/2009 2:30 AM (GMT 0)
Stacie, I can't believe I haven't weighed in on your thread!  I'm so sorry.  I don't have any experience with myositis or muscle weakness.  I have the opposite.  I can beat my hubby at an arm wrestle..... It's scary.  Truly.  But you have received a lot of great info from everyone.  I hope you find out soon what is causing this.

 

Keeping you in my prayers!

Posted 1/2/2009 4:59 AM (GMT 0)
I don't know whether or not my muscle weakness and pain is due to inactivity or something else. It's hard for me to get up out of a chair and when I walk I've been having more and more weakness around my hips and thighs. This has just been going on for three or four months. Some days are better than others. When I walk (as in go for a walk), if I walk over a mile, it causes a mini flare within a day or two. At first I thought it was a coincidence so I now refrain from walking until I feel good, and it's a pattern. When I get up from the sofa, a chair, or the bed, it's worse for the first 1/2 hour or so and then I seem to be able to straighten up and loosen up. And finally, I can't stand for more than a couple of minutes until I need to sit down. I don't spend any time during the day in bed, and I've been leading a pretty normal, although not active, life for the past year or so, so I get a lot more exercise than I did for a couple of years. I see my rheumy next week, I think, so i'll discuss it with her, but any ideas?
Posted 8/6/2009 7:22 PM (GMT 0)

Hi all, I know this is a months old thread but don;t have time atm to search deeper and this topic caught my interest, so I would like to know if anyone has answers out there for me.

Some of the things described here are very similar to things I have dealt with for about 15 years now, but have never been able to get a Doctor to take seriously because I am otherwise an active person.

To sum things up, I will re-ask the question I asked someone back in high-school- "Is it supposed to hurt to walk?"  For a few years by then I had noticed burning, uncomfortable fidgety pain in my hips and thighs, and sometimes in my calves ass well.  At other times this pain was also in my forearms.. can't remember from anatomy class but mainly the large round group of muscles underneath the forearm abutting the elbow.  The arm pain would make my fingers want to curl in, and I often would have to tie a shoe string around my fingers and then tie the other end around my upper arm the hold them extended and stretch them to relieve the pain.

With my legs, it has always just been painful to walk.  When I describe this to ppl they generally blow it off and don't take it seriously so I end up pushing myself and going on walks with my wife, or while vacationing in earlier years with friends on hikes, tours on vacation, etc.  I would then pay dearly for it in the evening with the severe aching burning pain in my legs and feeling of "rusty hips" that would just throb and burn.

This pain is so constant and nerve wracking that it leaks into my sleep and dreams, where I almost nightly dream that I am club footed or something similar at times attempting to hobble around but being barely able to move my legs, and mostly feeling (even in dreamstate) the awful pain.

Does this sound like what you are talking about, or anything else anyone has ever heard of?  I am quite grateful that I stumbled onto this site, because it sounds in many ways so similar to my issue, but I would like more information.  Where can I find it and under what type of listing?  It would be so wonderful to finally be able to put a name to this fairly constant, very unnerving pain.  I dread taking our dogs for walks, let alone vacations where we will be doing walking tours and the like, and would so like to have some understanding of what is going on.  Most of all it would be a god send to finally have some Dr finally take me seriously and listen to me.  Because I have been told so many times it was this or that minor thing that will go away, I have had to tell myself that and try to ignore it, and it has really affected me psychologically, I believe, as well, because it is real and it makes an otherwise wonderful, happy life have a hidden, extremely miserable side I feel i can't talk to anyone about.

Sorry again for bumping such an old topic but if just one person can give me any direction or answers it would mean the world to me!!!!

Thankyou for your time!

Sam

Posted 8/6/2009 9:20 PM (GMT 0)
Sam,

What is your diagnosis?  Are you currently being treated?  With what?

Lupus and myositis diseases are examples of diseases that can attack muscles and weaken them.  Myositis can destroy muscle tissue in some cases and produces pronounced weakness around the hip and shoulder girdle.... the proximal muscles.

If your muscles are weakened anything you do will put more stress on joints.  Strong muscles hold them in place and cushion them from wear and tear.

It could also be an arthritic condition. 

Suggest that you make an appointment with a rheumy who can assess if you have arthritis, lupus, or maybe something else.  There is no way any of us can determine what you have....we aren't doctors anyway.

Good luck,

Bill

Posted 8/6/2009 9:27 PM (GMT 0)
Stacie,
I'm sorry you are having to face this situation! I will praying for you! Judy
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