Tracy Barhite
Forum Replies Created
-
I also have muscle spasms and shaking. I first noticed the shaking shortly before my diagnosis in 2015. I have IBM (inclusion body myositis) it too is a rare form of MD. My shaking or spasms can happen in my arm’s or leg’s and usually when I am tired or I have over done it. Stress and having a cold or sickness also affects my muscles. My muscles can just give out at any random time which causes me to drop things or at worst to fall. As a result I try very hard not to overwork myself. My goal is to stay healthy and stress free.
-
I still go to get my haircut, but like you my hairdresser just sprays my hair with water. She usually cuts my hair short or sometimes I get a perm. Low maintenance hairstyles are much easier.
-
I agree! You have to plan out what you’re going to do and on what day to avoid burn out . Lol I still have trouble with that too!
-
I also have discomfort from MD. Although it’s not everyday. Most of the time it’s around my neck or shoulders. I have also experienced soreness or cramping in my lower legs. I find that doing some stretching helps, also not overdoing any activity. I have had to learn to take a break and rest.
-
I have done some research on service dog’s . Most agencies have a long wait time and approval process, anywhere from 1 to 3 year’s. Most also will not let you have another pet in the home. I didn’t have that kind of time to wait for a service dog. My doctor has told me since my diagnosis that I need to keep moving, walking as much as possible, so I opted for a dog that has had obedience training. I found my dog in an animal shelter, she walks with me and doesn’t pull. When the time comes for me to get a power chair I will get her some training to adapt to walking next to the power chair. So far this has worked for me.
-
Yes, I have learned that I need to ask for help. My husband usually stands and waits for me to get up or ask for help. It’s hard to loose your independence and rely on others.
-
The fatigue was one of the hardest things for me to deal with when I was first diagnosed. I take Methotrexate and it has helped me a lot with the fatigue. I still get tired and have to rest , but I rarely take a nap. I just started the medicine back in the summer, before then just taking a shower wiped me out. I had to learn to pace myself and not over do it.
-
If I’m in a restaurant chair I push up from the middle edge of the chair. If I’m in a booth I use the back part of the seat back and the table. Booth seats are becoming increasingly harder.
-
I totally agree with you! Don’t stop moving, even for a day! Never give up!
-
I don’t always walk for 30 minutes all at once. Sometimes it’s only 15 or 20 minutes at a time. I listen to my body. I take Methotrexate it helps with the fatigue, but not with strength or muscle loss. I too wish I had been a lot more active early on when first diagnosed. I feel for you having gotten this disease at such a young age. What type of MD do you have?
-
I was diagnosed in 2015 with Distal Muscular Dystrophy. Last year (June of 2018) my doctor did a muscle biopsy and changed my diagnosis to Inclusion Body Myositis. I guess it’s under myotonic Dystrophy. However I know mine is a little different because it’s autoimmune related.
-
I walk everyday usually for at least 30 minutes. I cannot lift much with my hand’s, those muscles are very weak. I think any kind of movement for people with MD is good.