I have amyopathic DM with a positive anti-jo1, and secondary Sjogrens Syndrome. Even though muscle enzymes are normal, I have remitting and relapsing muscle fatigue, weakness and pain. My limbs feel heavy and I have to pull myself upstairs. During flairs, I am afraid to take a bath for fear of not being able to get out of the tub. These episodes are accompanied by mental fog. How would you describe your muscle weakness?
Hi, I have PM, lupus and Sjogrens but I don't know if I am anti-jo1 (+). I am currently not in a flare according to the muscle enzymes...they're normal. However, I have continued having muscle weakness and fatigue. Some days are worse than others, depending on my level of activity and stress. I have trouble with stairs and walking at a quick pace. I have problems standing from a sitting position. I feel as if there are weights attached to my limbs. My arms are also weak and I have a difficult time reaching for objects. Muscle pain is a problem as well with some days worse than others.
Some days I don't understand how the enzymes are normal when I feel so out of normal!! Oh well...anyway, I am sad that you are going through some of the same aggravations that I do.
I find that frequent rest periods between activities helps to re-energize me and heat and massage for muscle pain. Have faith and stay strong!!
Nancy-the Myositis Association and the world panel of experts have made it clear muscle enzymes are not a good indicator of disease activity. Some have cks in the thousands and feel great. Others have a number of 30 and can't walk or swallow. CKs, aldolase, sed rates all need to be taken into consideration with how a patient is feeling and functioning. Also, muscle weakness and fatigue can be caused by muscle atrophy after a flare, medications (steroid-Pred induced myopathy), low iron, etc. Check into your local MDA-they should have physical therapists and occupational therapists who can help a lot.
Do you have fall precautions in the bath? Grab bars, non-slip mats, a phone, etc?
Thank you for sharing your journey. I have had similar experiences and it's good to know I'm not alone or imagining it.
Rodriguez Nancy said:
Hi, I have PM, lupus and Sjogrens but I don't know if I am anti-jo1 (+). I am currently not in a flare according to the muscle enzymes...they're normal. However, I have continued having muscle weakness and fatigue. Some days are worse than others, depending on my level of activity and stress. I have trouble with stairs and walking at a quick pace. I have problems standing from a sitting position. I feel as if there are weights attached to my limbs. My arms are also weak and I have a difficult time reaching for objects. Muscle pain is a problem as well with some days worse than others.
Some days I don't understand how the enzymes are normal when I feel so out of normal!! Oh well...anyway, I am sad that you are going through some of the same aggravations that I do.
I find that frequent rest periods between activities helps to re-energize me and heat and massage for muscle pain. Have faith and stay strong!!
I have a phone but none of the others. When I'm in a bad way, I don't bathe but shower instead.
LegoGal said:
Do you have fall precautions in the bath? Grab bars, non-slip mats, a phone, etc?
I have DM. My muscle enzymes have usually been pretty consistent with my flares.
When I flare I find it even harder to climb stairs, a lot like you say, I have to pull myself, then once I'm at the top my legs ache horribly and I'm out of breath. Holding my arms up to do anything, blow dry my hair, fold laundry…is very hard.
Taking a bath! We recently got our bathtub to function so I can take a bath and I'm afraid to get in for fear of not being about to get out! I feel your pain. And now that my carpal tunnel and tendonitis is acting up, it's VERY painful to use my hands to push myself up from a sitting or laying position using my hands. So the tub or potty is a painful experience every time.
The mental fog seems to be there all of the time. I don't think that has ever gone away for me. It's pretty constant.
I hope you can take a nice bath soon!!
Thank you. I also feel like weights on my legs and arms. When I walk , I feel like I'm dragging a boulder. I had to stop working last year.
Rodriguez Nancy said:
Hi, I have PM, lupus and Sjogrens but I don't know if I am anti-jo1 (+). I am currently not in a flare according to the muscle enzymes...they're normal. However, I have continued having muscle weakness and fatigue. Some days are worse than others, depending on my level of activity and stress. I have trouble with stairs and walking at a quick pace. I have problems standing from a sitting position. I feel as if there are weights attached to my limbs. My arms are also weak and I have a difficult time reaching for objects. Muscle pain is a problem as well with some days worse than others.
Some days I don't understand how the enzymes are normal when I feel so out of normal!! Oh well...anyway, I am sad that you are going through some of the same aggravations that I do.
I find that frequent rest periods between activities helps to re-energize me and heat and massage for muscle pain. Have faith and stay strong!!
I am in remission from DM and have been for quite a few years. However, I still have problems with stairs at times, exhaustion and other attributes of DM. All my tests come back as being 'normal' or borderline normal. I do have secondary autoimmune diseases and have blamed it on these. However, some problems can't be explained and I'm always wondering if it is the DM. The doctors call it remission according to their tests but we know our own bodies and what feels normal.
It just seems that DM might be a bit like Lymes. My cousin has Lymes and has had it for a long while. In remission for quite awhile, of course, but having severe health issues sometimes. Doctors telling him it is not due to Lymes because that is in remission. Now he is no longer able to do any of the work he's been trained for and had to go out on disability again. The first due to Lymes and now, well, they don't seem to know why since his tests come back 'normal'.
While I'm in remission I still carry some of the problems from DM. When I am tired I find it hard to swallow and I am out of breath with leg pain at the top of our stairs too. I have exercised some but not like I would like to. Due to back problems I'm a bit limited in my exercise. The doctor for my back says it is arthritis but I believe some of it is due to the destruction of muscle in my back when the DM was flaring. My rheumy says she doesn't think so but my back looked like a bad sunburn when the DM was flaring.
One of the doctors explained it as a fire... camping and you build a big fire and in the morning it is embers. No longer a fire but still there and able to do harm even as embers. I thought it was a good example.
I guess I've written all that to say that we know what is normal for each of us and just because it shows up 'normal' for the doctors and their tests doesn't mean it isn't there.
LegoGal said:
Nancy-the Myositis Association and the world panel of experts have made it clear muscle enzymes are not a good indicator of disease activity. Some have cks in the thousands and feel great. Others have a number of 30 and can't walk or swallow. CKs, aldolase, sed rates all need to be taken into consideration with how a patient is feeling and functioning. Also, muscle weakness and fatigue can be caused by muscle atrophy after a flare, medications (steroid-Pred induced myopathy), low iron, etc. Check into your local MDA-they should have physical therapists and occupational therapists who can help a lot.
Thank you for this information. I thought I read or heard something to this effect but unfortunately my rheumy is against treating me aggressively if the labs are not elevated. I know that it is not steroid-induced because when the dosage is increased I feel better in a couple of days. I was getting IVIG and was doing very well but was stopped when my labs were back to normal. I'm in the process of getting a new rheumy.
I also have JDM. You sound so like me. I have t look up Sjogrens Syndrome. I have fought even the thought of stairs since I was a small child. The pain and the muscle weakness is really hard. I have been in and out of a wheelchairs all my life. Right now I am walking very short distances. But it is worth the work. Even t stand t brush my teeth. Some days I can't do it. Even though. I have finally found people on here. I know I am not alone. I don't wish this on my worst enemy. I tell my self each day. Arm yourself with determination and the rest will follow.