I'm now almost 2 years since first diagnosis and treatment. I slowly built up my stamina and strength once I was able to walk again, but I had a bad spell between October last year and early march this year where I had almost continuous infections (I blame the meth) and so I couldn't exercise. I have noticed a considerable reduction in my strength since not exercising. When I talk about exercise, Im not talking strenuous stuff here, 10 minutes on a cross trainer, 30 minutes walk, that sort of thing.
I've recently started gentle exercise again. Weights to strengthen my arms as Ive had a lot of weakness and pain centred around them.
Question is, have others found that exercise (even if gentle) is essential to keeping our muscles from atrophying - I am very sore and achy all the time at the minute.
I think it's essential, but hard to do. Maybe because I've had some damage over the past couple of years too (diagnosed April 2012). I try to jog from the bedroom to the living room because somebody's yelling for me and it's like I'm going to have a heart attack. So jogging/running of any sort is out. When I was first diagnosed and I'd try to run my thighs/legs would not approve and I would fall every time.
My doctor suggested water aerobics, and since I've been doing that, I think I've gotten a bit stronger. Weights are pretty hard to do. I'm guessing the weights you use are light? I used to use 8-10 pound weights now I'm down to 5 pound and I can't do anything for long. It's really hard to keep it up with the feeling I get after though.
Yes the weights are the lightest you can get. About 5 lbs I think. It hurts. It’s sore. It’s all such a struggle. I was diagnosed June 2012. We are virtually DM twins Nicole!! I also feel like exercise isn’t as effective as it used to be before DM. I used to go to the gym and run before and was pretty fit and my body responded to exercise well. Now it’s like someone else’s body. It seems to not respond to exercise at all. Everytime is like the first time. I can’t build up. It’s always hard. Do you find that?
We are virtual twins, how about that? Maybe together we’d make a functional person!!
I did used to go to the gym regularly, never was a runner so that’s not missed but working out steadily is. I was about 135 in good shape, now I’m about 25-30 pounds heavier (was 40) thanks to the prednisone, but about a month or two ago doc took me off of that so I think slowly the weight is trying to creep down. If I could keep my face out of the junk food I’d be ok.
I definitely feel like a completely different person , how that can happen in two years is beyond me, I know you understand.
suzedablooze said:
Yes the weights are the lightest you can get. About 5 lbs I think. It hurts. It’s sore. It’s all such a struggle. I was diagnosed June 2012. We are virtually DM twins Nicole!! I also feel like exercise isn’t as effective as it used to be before DM. I used to go to the gym and run before and was pretty fit and my body responded to exercise well. Now it’s like someone else’s body. It seems to not respond to exercise at all. Everytime is like the first time. I can’t build up. It’s always hard. Do you find that?
Though I don't have Myositis, I have 3 autoimmune diseases with lots of joint, facet, muscle, and disc problems, and was on Enbrel for about 2 years. I was taken off Enbrel Jan 3 of this year and STILL cannot get rid of recurring UTIs. So the Rheum suggested I have a culture sent off to the lab, as I am allergic to the meds most effective for this. (back to the ruptured Achilles tendons in both legs in the past) Should have gone the last 2 days, just cannot get off the couch!
So the more I lay around, the more my joints lock up, more muscle spasms and attacks I have! It's a vicious cycle, to keep picking yourself up, trying to maintain anything on a regular basis.
My heart goes out to all of you, I hope that a real CURE is on the horizon for all!
That's exactly what it is SK, a vicious circle. I also have a torn cartilage in one knee which doesn't help matters. Im supposed to have an operation on it, but I really cant face it, ive been prodded and poked far too much these last couple of years, I need a break from those sorts of things (well apart from my regular colproscopy for cervical cancer, I have to do that)
As for a cure...well...I cant share the article as its a subscriber only site but I read in New Scientist about a new possible cure for RA and other autoimmune disease which involves an electrical current being passed over certain areas of the body. Sounds like science fiction, but New Scientist is a reputable science magazine here in the UK. It's early days for the treatment but it has cured (actually cured) one RA patient. So there is hope
SK said:
Hi Suze,
Though I don't have Myositis, I have 3 autoimmune diseases with lots of joint, facet, muscle, and disc problems, and was on Enbrel for about 2 years. I was taken off Enbrel Jan 3 of this year and STILL cannot get rid of recurring UTIs. So the Rheum suggested I have a culture sent off to the lab, as I am allergic to the meds most effective for this. (back to the ruptured Achilles tendons in both legs in the past) Should have gone the last 2 days, just cannot get off the couch!
So the more I lay around, the more my joints lock up, more muscle spasms and attacks I have! It's a vicious cycle, to keep picking yourself up, trying to maintain anything on a regular basis.
My heart goes out to all of you, I hope that a real CURE is on the horizon for all!
Nicole, it will. I've now lost 3 stones since my fatest pred weight and Im back to my pre DM weight - I did have to use Slimming World though to loose the last stone (that's 14lbs to you Americans) - feels good to be back in my old jeans though, wow that fat arse really didn't suit me.Comfy though.
Nichole Smith said:
We are virtual twins, how about that? Maybe together we'd make a functional person!!
I did used to go to the gym regularly, never was a runner so that's not missed but working out steadily is. I was about 135 in good shape, now I'm about 25-30 pounds heavier (was 40) thanks to the prednisone, but about a month or two ago doc took me off of that so I think slowly the weight is trying to creep down. If I could keep my face out of the junk food I'd be ok.
I definitely feel like a completely different person , how that can happen in two years is beyond me, I know you understand.
suzedablooze said:
Yes the weights are the lightest you can get. About 5 lbs I think. It hurts. It's sore. It's all such a struggle. I was diagnosed June 2012. We are virtually DM twins Nicole!! I also feel like exercise isn't as effective as it used to be before DM. I used to go to the gym and run before and was pretty fit and my body responded to exercise well. Now it's like someone else's body. It seems to not respond to exercise at all. Everytime is like the first time. I can't build up. It's always hard. Do you find that?
p.s. yes, I know EXACTLY what you mean by being a different person, some good though, I am a gentler person and feel I have learnt things - that I have an insight. I do feel like someone stole my body a couple of years ago and replaced it with a dud one though too.
Nichole Smith said:
We are virtual twins, how about that? Maybe together we'd make a functional person!!
I did used to go to the gym regularly, never was a runner so that's not missed but working out steadily is. I was about 135 in good shape, now I'm about 25-30 pounds heavier (was 40) thanks to the prednisone, but about a month or two ago doc took me off of that so I think slowly the weight is trying to creep down. If I could keep my face out of the junk food I'd be ok.
I definitely feel like a completely different person , how that can happen in two years is beyond me, I know you understand.
suzedablooze said:
Yes the weights are the lightest you can get. About 5 lbs I think. It hurts. It's sore. It's all such a struggle. I was diagnosed June 2012. We are virtually DM twins Nicole!! I also feel like exercise isn't as effective as it used to be before DM. I used to go to the gym and run before and was pretty fit and my body responded to exercise well. Now it's like someone else's body. It seems to not respond to exercise at all. Everytime is like the first time. I can't build up. It's always hard. Do you find that?
I understand about the poking and prodding, I got to the point where the more invasive things they did to me, the worse I got, the pain management injections were really the last straw there. Now unless it's absolutely necessary, my theory is "just don't touch me"!
I hope everything turns out okay with you on the cervical test, this is surely a worry that you don't need. I'll be sending good thoughts your way!
Thanks for the heads up on the RA cure, I am excited to search the web for that! I'm also in the Sjogren's Syndrome group and someone posted a successful stem cell therapy being done in China! An actual CURE! Now we wait until it comes to the US and becomes affordable!
Good for you on the weight loss! That was quite a feat! I mean it, show off those jeans! ha!
xxxxxxxx SK - it is good to have people who get it (BTW I came off Facebook for various reasons so this group is great for those of us who don't use Facebook - thanks Nichole!)
SK said:
Hey Suze,
I understand about the poking and prodding, I got to the point where the more invasive things they did to me, the worse I got, the pain management injections were really the last straw there. Now unless it's absolutely necessary, my theory is "just don't touch me"!
I hope everything turns out okay with you on the cervical test, this is surely a worry that you don't need. I'll be sending good thoughts your way!
Thanks for the heads up on the RA cure, I am excited to search the web for that! I'm also in the Sjogren's Syndrome group and someone posted a successful stem cell therapy being done in China! An actual CURE! Now we wait until it comes to the US and becomes affordable!
Good for you on the weight loss! That was quite a feat! I mean it, show off those jeans! ha!
Age is an important factor. Beyond 30 something you don't build new muscle. I'm 61, so the muscle I've lost to poly isn't coming back. Wikipedia says you don't even notice the weakness till you've lost 50% of your muscle mass. Doc has recommended passive exercise in a pool. I feel quite well usually. Then I ruin in by walking or most any other physical activity. Where I used to routinely lift over 100# at work (before 2009) today 30# is easy, over 40# and I'm flat on my back for several days.
OH! That is interesting (Arthur Dent - really? Is that your name or are you, like me, a mega Hitchhikers Guide fan?)
I am 50 and I keep saying to my partner that it just seems much harder to to get fit than it used to. I know I lost a lot of muscle mass when i was ill, even in my hands. That's worrying, why don't the doctors tell us the extent of the damage? My neurologist expects me to be able to virtually do a marathon at the minute and is always on my case saying I'm not exercising enough. Its extremely frustrating - if we had all the facts we could make our own educated decisions. Thanks Arthur (hope Thursday wasn't too bad a day, I know how you can never get the hang of them)
You know, I just went through something similar when my mom took a fall down the stairs and broke her hip. There were times when the OT and PT acted like she was 21, instead of 81! Though I usually only opened my mouth in a supportive way, I had to call them down a few times, asking them to please just remember her age!
OH! That is interesting (Arthur Dent - really? Is that your name or are you, like me, a mega Hitchhikers Guide fan?)
I am 50 and I keep saying to my partner that it just seems much harder to to get fit than it used to. I know I lost a lot of muscle mass when i was ill, even in my hands. That's worrying, why don't the doctors tell us the extent of the damage? My neurologist expects me to be able to virtually do a marathon at the minute and is always on my case saying I'm not exercising enough. Its extremely frustrating - if we had all the facts we could make our own educated decisions. Thanks Arthur (hope Thursday wasn't too bad a day, I know how you can never get the hang of them)
Real name is Paul. Signup said not to use my real name. Thought "42" was too esoteric. Doctors come out of med school with almost no knowledge of the immune system (weird, huh?) Only those who go on to do a residency in rheumatology get "the memo." That's why so many people go on suffering, going from doc to doc without finding an answer. I'm a RN with 30 years experience, and once I was too sick to work, it took me over a year to get a correct diagnosis. In hindsight, the symptoms were there for at least 15 years. Some docs would ask if I had lupus, but none would refer me to a rheumy.
I was originally misdiagnosed with lupus (that was after being misdiagnosed with excema, mites and generally being middle aged). My step daughter is going to become a rheumatologist and has studied myosotis. But she says she was literally the only student who had heard if it and that was because of knowing me. It’s extremely frustrating that we have such a little known illness. I just hope that general immunology research will
Make a break through that will help all if us. (Ps. I like the inane Arthur dent)
It's an "orphan" illness. Occurs about 1 time per half million people. No wonder they don't do a lot of research on it. The Muscular Dystrophy Association has it on their list, but it really isn't MD. There's one other case here in El Paso, city of half million. That makes it an epidemic! Twice the expected occurrence, LOL. Paul
Here’s me getting off topic again but for some reason when I read Arthur Dent I thought of Harvey Dent, two face from Batman! But when Suze mentioned the Hitchhikers Guide it came back to me. My hubby had me watch that just recently, was quite the interesting movie!
When my symptoms first appeared it started as eyelid rashes so docs first thoughts were Lupus too.
I've heard it does, or at least helps the ones left, but I haven't been able to lately, my legs are like spaghetti, lol, Hoping now that summer is coming I can start walking again, keep up the good work,