Can you tell if the muscle weakness comes on little at a time then progresses over a period of time. For example sometimes my arms or my upper legs feels weak then it go's away at no particular time of day or for any reason I can be sitting there watching T.V and feel it but it always go's away ,I can even go for days and have no weakness then I can feel numbness or weakness. So I was just wondering if this just part of the process or if this just could be the fatigue or something else
i do similarly the same, but mine is usually connected to fatigue as well. my problem tho, it doesn't go away. I lose ground periodically that really doesn't come back
in the beginning about 10 years ago for me the first thing I noticed I could not run fast anymore then in 2004 I was playing racquetball and my left thigh buckeled, still strong enough to catch balance, but over the last 3 to 4 years the muscle have been atrophying and I am progressively getting weaker and can not bet up without help from a chair, I have fallen 12 time in past 4 months broke ribs hit head tripped every nightmare is happening I hope they find the right meds to stop he progression or in a few years I will need around the clock care
If you have has a muscle biopsy to confirm IBM then the future is bleak. Slow but relentless progression and continuous change to life style. Goo d luck and answer if you would like more info....
Prior to my IBM diagnosis, I began to have a problem using hands, weakness in legs and difficulty in swallowing. These difficulties have worsened over time but with limitations, I'm still very active and exercise daily. Fatigue has not been a problem for me. In short, you can learn to live with the muscle weakness.
My Neurologists here in NYC don't even know if I do indeed have "POLYMYOSITIS"!!! But that is how it progressed with me.
Then, I could NOT get up from the floor without the use of a piece of furniture to help drag me from the floor...then it progressed to NOT being able to walk up the subway steps, here in Manhattan and theN:
I could not accomplish tasks raising my arms above my head.
I have a post grad degree in Critical Care Nursing and I suggest that you go to your doctor or most favorably, a "Rheumatologist" and have your bloods drawn for:
CK and Aldolase Levels!
Hope this helps, Barbara!
PRAY for her! Miracles happen every day! I believe in GOD and if we ask anything in His name then...anything is possible!
Hugs,
Marijo/Manhattan
Pads said:
If you have has a muscle biopsy to confirm IBM then the future is bleak. Slow but relentless progression and continuous change to life style. Goo d luck and answer if you would like more info....
Dear Wendy,
What exactly do you mean by: " I lose ground periodically that really doesn't come back" ???
Marijo
wendy krauss said:
i do similarly the same, but mine is usually connected to fatigue as well. my problem tho, it doesn't go away. I lose ground periodically that really doesn't come back
Yes, especially when I feel like I am catching a cold or some other ailment or in cold weather I get very weak.
Have had Polymyositis for nearly four years. Lately there is noticeably more weakness, and, yes, there is increase when fatigued or dealing with other physical issues--infections, medications, itchy rashes or even toothaches.
Does anyone know how much time is involved in reaching a stage that prevents independent living?
Thanks, Nell
I was told by Kings Collage Hospital 7yrs ago that it could be a slow progression ( down hill ) with odd lurches. This has proved to be 100% correct for me. Legs and left arm more or less useless, with right arm wasting away rapidly despite regular pool exercises I can walk a little when supported by 1.3m of water. Half an hour is enough physically with the travel to and from hospital and the faf of being got ready before and after. But the mental stimulus of change and people is such a tonic.
I can only wish that your physical slide is slow and painless and that you can look on all the positive things in your life through the tough times
Blackie
I just came back from the Rumatalagest so far most of my test keep coming back negative exsept the skin byopsy so now he is going to see if my insurance will pay for a full body MRI stir ? He says that he knows something is going on but not sure what so far all of my symptoms are showing dermatomyositis and the skin byopsy showed that, but he also says maybe a lopus.
Dear Blackie,
Concur with positive concluding statement. I am still mobile but looking at getting hospital type motorised profile bed to compliment toilet seat lifter and stairlift and motorised chair all needed to get up from seated situation. Because I am so slow with rollator when outside we have now sourced a made to measure manual wheelchair with a raised seat so I can stand up unaided which has opened the door to old pursuits. Going to the shops, park etc!! In the house it is walking frame and furniture walking to get about - how about you??? Pads
blackie said:
I was told by Kings Collage Hospital 7yrs ago that it could be a slow progression ( down hill ) with odd lurches. This has proved to be 100% correct for me. Legs and left arm more or less useless, with right arm wasting away rapidly despite regular pool exercises I can walk a little when supported by 1.3m of water. Half an hour is enough physically with the travel to and from hospital and the faf of being got ready before and after. But the mental stimulus of change and people is such a tonic.
I can only wish that your physical slide is slow and painless and that you can look on all the positive things in your life through the tough times
Blackie
Pads said:
Dear Blackie,
Concur with positive concluding statement. I am still mobile but looking at getting hospital type motorised profile bed to compliment toilet seat lifter and stairlift and motorised chair all needed to get up from seated situation. Because I am so slow with rollator when outside we have now sourced a made to measure manual wheelchair with a raised seat so I can stand up unaided which has opened the door to old pursuits. Going to the shops, park etc!! In the house it is walking frame and furniture walking to get about - how about you??? Pads
blackie said:
I was told by Kings Collage Hospital 7yrs ago that it could be a slow progression ( down hill ) with odd lurches. This has proved to be 100% correct for me. Legs and left arm more or less useless, with right arm wasting away rapidly despite regular pool exercises I can walk a little when supported by 1.3m of water. Half an hour is enough physically with the travel to and from hospital and the faf of being got ready before and after. But the mental stimulus of change and people is such a tonic.
I can only wish that your physical slide is slow and painless and that you can look on all the positive things in your life through the tough times
Blackie
I am hopefully that it is slow and that they can get it in to remission ,the good thing so far is I can still work and I’m just going to take things one day at a time.
Don't get to discouraged. I was diagnosed 4 years ago after a muscle biopsy, with Polymyositis. At first I on methotrexate which helped but too many side effects. After about 6 months I got on imuran and have kept the disease under control on only 50 milligrams per day with no side effects. I am probably not 100 percent but close. Thank the Lord to be living when these and many more medications available. I also am thankful that my body has responded to the medication. I know there are some who don't. I got a good rheumatologist that diagnosed me quickly and got it under control quickly. It is important to get on some meds to get it under control before the disease damages your muscles.
Nell everyone is different, I’m on a new treatment. Ivig to try to slow the progression. I’ve had 2 rounds, I get my blood drawn around the 19,or 20th to see what my numbers are. I’ve dealt with this, confirmed since 2009, although I think I’ve had it longer. My joints seem to be deteriorating pretty rapidly, first shoulders in the space of 12 months went from mild arthritis to moderate to severe, then my knees, and now my hips. Seems everything is stiffening so fast, things I used to due, can no longer. Just keep moving tho
Nell said:
Have had Polymyositis for nearly four years. Lately there is noticeably more weakness, and, yes, there is increase when fatigued or dealing with other physical issues–infections, medications, itchy rashes or even toothaches.
Does anyone know how much time is involved in reaching a stage that prevents independent living?
Thanks, Nell
If I can remember thats part of the way my myositis began and that I had problems getting up sit to stand was the real hard part for me and has stayed that was for many years. My legs and arms got weak slowly. Hope you get along okay and just enjoy the weakness only some times and enjoy the strong times even more stay strong and you will do okay. sending gentle hugs
I had the muscle biopsy done and I have IBM. I also had the ck blood test which should be 254 mine was 9800 a year ago. Yes 9800. Now my ck is 281. My leg muscles are strong one day but weak the next. My arms ache at times. My fingers ache and feel strong one day and the next day weak. I can lose my balance quickly. Very fatigue, overly upset on little things. Lot of negative emotions lately. Even with the ck numbers in balance I feel like I'm losing muscle every day and sliding backwards. Is this the way the sIBM works??? I'm 61 male living in pa. Not much talk about IBM here. Dr. has helped me allot but I need to know more on this disease.
mike said:
I had the muscle biopsy done and I have IBM. I also had the ck blood test which should be 254 mine was 9800 a year ago. Yes 9800. Now my ck is 281. My leg muscles are strong one day but weak the next. My arms ache at times. My fingers ache and feel strong one day and the next day weak. I can lose my balance quickly. Very fatigue, overly upset on little things. Lot of negative emotions lately. Even with the ck numbers in balance I feel like I'm losing muscle every day and sliding backwards. Is this the way the sIBM works??? I'm 61 male living in pa. Not much talk about IBM here. Dr. has helped me allot but I need to know more on this disease.