Home exercise for Inclusion Body Myositis
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- Опубликовано: 7 окт 2017
- The Myositis Association presents this small group session at the 2017 Annual Patient Conference in San Diego. Dr Helene Alexanderson leads a group of attendees with IBM in an interactive demonstration of a home exercise program.
Could you do a Instructional video with a therapist and 1 patient. Please show each exercise. Then explain all the ends and outs. Please!???
I’ve gotten diagnosed with DM September of 2018 and with the lack of knowledge my Doctors have on it I am scared I’ll only go down hill. I’ve been trying to do as much research as possible, but honestly these Doctors don’t even pay attention to what I’m telling them and the nurses are always so rude.
Totally agree. I have IBM and was told, basically to go home and wait. That the next year I would probably need a cane! Now I eat clean and detox my body and mind and spirit. We are our best healers.🙏🏼
I've got a weakness in my hands so following having symptoms of Sjogrens I come across IBM. I couldn't understand the weakness and I'm waiting for a nerve conductor study but yes general dr's aren't great and helping with stuff that isn't a simple fix with antibiotics
I have DM and PM ....it’s been 8 months since I was diagnosed and seeing these people they look so healthy I’m pretty much confined to my house. I’m nowhere near as healthy as these folks... gives me hope
IBM Is driving me nuts so many problems started at Rehabilitation centre Neuro Group doing some work as here sit to stand, Lay on my back lifting legs and trying to hold them in position for 5 secs, On My back with knees bent lift my bottom up hold for 5 secs. 1 stair step up then down. parallel bars big side steps along the bar length etc im finding DOMS (Delayed Onset Muscle Soreness) a problem anything i do a day or two later i feel like i've been hit with a Bus, and Chronic sweating while using any muscle its like im stood under a shower. dysphagia exercise do the swallow motion and at the end of it hold the tongue to the roof of the mouth try and strengthen swallow muscles. at the minute im fighting a losing battle with muscles loss and weakness. onward upward in the IBM Fight
I have a weakness holding my phone when using it, the same with any other object. I feel the strain from holding an umbrella up to holding something light downwards in pinched between my thumb and fingers but on the physios resistance tests I scored 4 and 5. Where my Dr said I was 5 in my left and right. So what does that mean ? I don't know if I've got this but I feel the strain of holding things that I never used to. I'm waiting for a nerve conductor study but will ask the Dr to check my muscle enzyme levels. I don't know if he will though as they keep telling me to wait for the nerve study
I have come back to this video many times.More reassuring than I can express. Just did 3 stands from sitting and rested 10 min then walked in alley 5 min with dog and a trekking pole, heartrate still bounding and thighs burn like a 20mi bike ride.Was sent to pool therapy but was only allowed twice a wk intermittently as holidays and staff call off but when I could go was very helpful except was 40 mi away and Y keeps pool at 82 so I know the pain would be overwhelming, not sure can get up a ladder. Each session wiped me out 2 days to the point I couldn't do ADL's. Trying to incorporate ADL into exercise. Anyone else get so tired your face feels heavy??
Sorry to be off topic but does someone know a trick to get back into an instagram account..?
I stupidly forgot my account password. I love any tips you can offer me.
@Cohen Dane instablaster =)
Diagnosed at 36. 39 and going strong(weak) but strong
How are you doing now? Hope you are getting better?
2 days ago got dx of IM-VAMP after 2 yrs of constant fatigue with DOMS and verbal abuse from medical providers, was sent for PT eval after ankle fracture and got yelled at for 'not using the right muscles' "you should be able to do 20 of these,you aren't trying" After just the eval was having trouble driving car, next day couldn't get dressed. Sort of scared to go near PT after that. Went from working 10 hr shifts and lifting pts, cross country skiing, biking 6 mi and mowing the front yard in 20 min to being exhausted going to grocery store in mobility cart, mowing front yard takes 1.5 hrs ( small area) Glad for shelter dog who braces my legs, lifts me from floor and brings me shoes, puts pressure on thighs in spasm and generally watches me. Need hope things will get better.
Cheryl Carlson 8
Hi
Can I ask a question to all? Please describe what your muscles in your legs feel like when you sit and get up from sitting. She calls it "tired" in your muscle. I'd describe it as it feels like my quads are experiencing anti-gravity. You know that feeling when your stomach goes upside-down on a fast roller coaster descent? I feel that in my muscles. I guess it's weakness. I'd like more people's descriptions please!
My mitochondrial doctor describes it to people who don’t go through what we do is it is like having the flu. Everyone has had the flu right. So when you have the flu your body wants to get up and do things but you literally can’t. It’s like there’s something attached to our muscles draining them . You have to rest and go slowly. His description is actually the most accurate way I can think of to describe it to people. Some people really don’t get it. They call us lazy as if we want to suffer this way. First time I told someone they were like yeah I have had the flu the way it drains your energy is terrible. I said yeah now imagine living like that everyday of your life. They gave me a sad look and a hug.
Hello. From what you are describing, my legs feel like jelly sometimes, as if they are not going to carry my weight. Stairs and curbs are an ordeal. But I am determined to exercise as much as I can to maintain what I have. It is certainly a weakness, for sure.
Very helpful. Thank you very much. I am an s-IBM and xIBMer ;O)