Hopefully you can follow my story. Many years ago, I told my internal med doc I had the achy disease. At times it would get so bad, I really thought a scooter sounded perfect. I was sure it was fibro. It would go away. Well recently I didnt realize I injured the muscles in my neck right arm, that side because a child pulled his legs up that was to walk. I was nursing my pains, muscles between holidays, not realizing the initial cause. I also was so fatigued even after they got better, first time ever I was xmas shopping xmas eve. My blood work before this was fine according to doc..but 2yrs before that he thought myositis..had an elevated cpk. I dont recall..both my parents were dying. I am thinking of going to him because I know i was better, much better..however getting fatigued again. Did start to work out..slow. I have minor weakness if i pick up a heavy mug of water. I use two hands or my left (im right handed). Weights I notice right bicep not as strong. Pushing up on a weight, i seem weaker. I need to lose some weight, does myositis make it this hard? Confused and discouraged....


Bethany I am having a little trouble following your story...I understand the being confused, this is a confusing disease! Hang in there and if you don't feel you are getting the answers you need there is nothing wrong with a second opinion. Rest but try to stay active. I wish you the best and hope you get a confirmed diagnosis soon.

my myositis has complicated weight loss for me, because every time I go to work out, whether its a light work out or the opposite I cant move for a week afterwards. the muscle pain and fatigue are horrible, for me its frustrating on so many levels. what I have found tho is that water workouts hurt so much less and the fatigue isn't as bad. theres been a lot of studies done on working out vs not the drs all seem to feel its better to do something than it is to not and the rise in the cpk under most circumstances isn't enough to warrant huge concern. as far a weakness, mine comes and goes depending on the level of disease activity. for whatever reason my cpk never goes to a "normal range". my rheumy told me she might never be able to get me into that range, even with all the meds im taking, so I always have disease activity, hate to think what its doing to my muscles, but oh well. you need up to date blood work tho and an evaluation for myositis, cpk, ana, sed rate, rf and the list goes on from there. good luck stay in touch

High Bethany and Everyone,

I just saw my neurologist yesterday, Dr. Goran Rakocevic, at Jefferson in Phily Pa. He has considerable expertise with this illness and advised me to be vey careful with exercise. To much could hurt your existing muscle cells to the point of losing them and to little they start to atrophy. There are many web sites that have access to physical therapy for IBM, MS is one, I highly suggest you read and do the exercises. It is very important to maintain whatever cells you have since there are future possibilities for reversing this illness. By the way Dr. Rakocevic is accessible by email...look him up in the Jefferson Medical University web site and hopefully he will be able to answer your questions. Hope this helps and let's pray for a cure.

Wendy and Morris thank you so much. I did all the reading however I accidentally found out my doctors suspicions. I was not really telling him/ parents dying about my soreness 2 yrs ago when he had the blood ck elevations, after that year I felt pretty good, lost weight, biked, tennis. This year…suddenly lost my mother in law, cared for her. Very different symptoms…more sudden. Found dx in my online history, the office just started doing. So here I am. Paying attention to my body. Not liking that I can’t just go to my old ways. It makes all sense. Will see my ent doc, go from there. Will read your docs info as well . I am grateful for everyday and all I am able to do. Thanks!

Stress is one of your biggest enemies...the sudden loss of your mother in law may have been the trigger that caused your symptoms. I was under inordinate stress last year and was very sick, hospitalized twice, once for a month...much of that stress has resolved and even though my muscle enzymes are elevated again I am feeling pretty good. Yoga and meditation are good stress relievers...I also spend time each morning reading my devotional and bible, helps me to put things into perspective and be thankful for each day. I have Multiple Sclerosis (10 years), newly diagnosed last year with MCTD and Dermatomyositis which is what put me in the hospital, I was wheelchair bound for a while but walking and working in the gym now.

Good Luck...and God Bless,


I think my body is weird. What I went through with my parents dying 3 months apart and my siblings pushing me away for a year, now we’re better was really horrible, painful, stressful. The worse. I had some minor things, not sure about my ck level after all that. Then not even 2 years later his mom…yes we cared for her. I knew my body seemed different, very exhausted. Trying to get into the internal med doc…not happy with his schedule. Want to see my levels and go over things. Thanks Sue, you have lots going on…so if you can do it, I feel silly complaining.

Hang in the Bethany sometimes this disease takes awhile to figure out, just know we are here for you to help you navigate this twisted path we all seem to be following. Hugs to you

Thanks Wendy…as I get my answers from my doctor and think of more questions, I will ask more.

My first go at this so fingers crossed ( or at least held together )
I am73yrs male ex UK now in central Portugal. Moved here 6yrs ago to chill and tour. Fat chance legs not recovering from 5way heart bypass, eventually diagnosed at Kings .London with IBM.
Have slowly gone down hill with lurches from time to time
Legs now 95% us left arm fingers to shoulder the same, right arm ,fingers, shoulder 80% us
Best bits are swimming pool at Coimbra hospital twice most weeks for half an hour I can walk ( ish ) and feel almost normal .I have a Balder wheelchair so a degree of independance once I have been lifted in.The rest of mind and body OK. When asked how I am the reply is that I am fine just my arms and legs don,t work.
I also have a wonderfull wife to look after me even to turn me over in the middle of the night
I also live here and not in Syria or the Ukrane BUT at times don,t know if another 10yrs of this is so good but we live in hope.

This is such a confusing disease for us and for doctors, so it's frightening. But know that we are all here for each other.

As far as weightloss, it's such struggle, between the medications and the muscle pain and fatigue. Just don't over do it when you are feeling well. I agree stress is a hug enemy!!

My thoughts are with you!

were here sweetie.....

Bethany said:

Thanks I get my answers from my doctor and think of more questions, I will ask more.

Thanks Nicole, I recently had my bloodwork done. I was starting to feel better. Only thing is weight loss none, actual weight gain. My ck was perfect ,58. He did lots of bloodwork for metabolism. I have not been on any steroids.My huge struggle, my battle alone. It seems he mentioned my muscles having a myositis episode? Seems to be watching maybe, because never any other high levels. My bp has dropped greatly since exercising 150/80 now 107/71=.typically it’s been 120/72 I’m a healthy fat Thanks for all your support. If I have. An episode like last time I will go in immediate, then insist on rhemy, any more weight gain, will also insist and make him work. Thank you, Bethany